A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017

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A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017
A committed
collaboration
The Anthony Nolan and NHS Stem Cell Registry
Annual Review of 2017

                                               Olivier, donor
A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017
A committed
collaboration
The Anthony Nolan and NHS Stem Cell Registry
Annual Review of 2017
                                                                                                                      CONTENTS

                                                                                                                      BACKGROUND:                          3
                                                                                                                      FOUNDING MEMBERS

                                                                                                                      INTRODUCTION:                        5
                                                                                                                      THE STATE OF THE REGISTRY IN 2017

                                                                                                                      KEY STATISTICS                       6

                                                                                                                      THE REGISTRY TODAY                   8

                                                                                                                      PROVIDING UK DONORS                  9

                                                                                                                      CORD, THE STORY SO FAR               10

                                                                                                                      ALIGNED REGISTRY 2017 DEMOGRAPHICS   11

                                                                                                                      STEM CELL PROVISION 2017             13

                                                                                                                      SCIENTIFIC PROGRESS IN STEM CELL     15
                                                                                                                      TRANSPLANTATION AND DONOR FACTORS

Anthony Nolan                        DKMS UK                         NHS Blood and Transplant   Welsh Blood Service
2 Heathgate Place                    Ashburnham House                Oak House,                 Ely Valley Road,
75-87 Agincourt Road                 Castle Row,                     Reeds Crescent             Pontyclun,
London                               Horticultural Place,            Watford, Hertfordshire     Mid Glamorgan
NW3 2NU                              London W4 4JQ                   WD24 4QN                   CF72 9WB
anthonynolan.org                     dkms.org.uk                     nhsbt.nhs.uk               welsh-blood.org.uk
0303 303 03 03                       020 8747 5620                   0300 123 23 23             0800 252 266

Registered charity no               Registered charity no
803716/SC038827                     1150056
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                              2
1257CM
A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017
BACKGROUND                                              FOUNDING MEMBERS

             The fifth State of the Registry report has              1.4 MILLION PLUS   Anthony Nolan
                                                                                        Founded in 1974, Anthony Nolan was the world’s first bone marrow
                                                                     POTENTIAL STEM
             been compiled by the Anthony Nolan and                                     registry. Four decades later, the charity has expanded its reach,
                                                                                        saving the lives of people with blood cancer and blood disorders
                                                                     CELL DONORS
             NHS Stem Cell Registry. It highlights the vital         ARE ON THE UK’S
                                                                                        across the UK and beyond. It does so with the help of groundbreaking
                                                                                        research, dedicated patient support, and a register of almost 680,000

             work that was undertaken in 2017 towards                ALIGNED REGISTRY
                                                                                        truly remarkable volunteer donors.

             achieving our shared ambitions: recruiting                                 DKMS UK
                                                                                        DKMS is an international charity supporting patients living with a blood
             stem cell donors to the aligned registers,                                 cancer, helping them find a matching blood stem cell donor and giving
                                                                                        them a second chance at life. DKMS UK was founded in 2013 as a

             banking umbilical cord blood donations,                                    registered UK Donor Centre and has recruited more than 330,000
                                                                                        potential lifesavers to the UK register. Those aged between 17-55 and

             and providing donated stem cells to those                                  in general good health can register online for a home swab kit at
                                                                                        www.dkms.org.uk

             in need of a lifesaving transplant.                                        NHS Blood and Transplant
                                                                                        NHS Blood and Transplant (NHSBT) is a Special Health Authority,
                                                                                        responsible for providing a safe and reliable supply of blood, blood
                                                                                        products and expertise to hospitals in England; for increasing the
                                                                                        number of organs available for transplant in the UK; and for the
                                                                                        provision of tissues and stem cells to the NHS. The British Bone Marrow
                                                                                        Registry is a division of NHS Blood and Transplant. It holds details of
                                                                                        stem cell donors and cord blood donations from England, Scotland
                                                                                        and Northern Ireland. Almost 364,000 donors are registered.

                                                                                        Welsh Bone Marrow Donor Registry
                                                                                        Founded by the Welsh Blood Service in 1989 to provide high quality
                                                                                        donor typing, the Welsh Bone Marrow Donor Registry has recruited
                                                                                        almost 65,000 blood donors to its panel – incredible people who
                                                                                        give hope and a second chance to patients throughout the world.
                                                                                        The Registry is proud to be working with donors, patients, transplant
                                                                                        physicians in Wales and centres across the globe.

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                 3
A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017
FRANCIS’S STORY
                                                                     Francis Mason joined the Anthony Nolan register in 2014.
                                                                     Three years later, Christmas 2017 turned out to be
                                                                     memorable when he heard he was a match for someone.

                                                                     'I had seen both the amazing stories of successful donations and
                                                                     the impact this has on people’s lives, as well as the incredibly sad
                                                                     stories of those who hadn’t been able to find a matching donor
                                                                     in time.

                                                                     'I was really surprised when I got called up to say I was a match,
                                                                     but I was also excited to be able to help someone. It never once
                                                                     crossed my mind that this was something I didn’t want to do.

                                                                     'I kept thinking about the recipient and wondering how they were
                                                                     and what they were going through, and hoping that this would
                                                                     give them the chance to lead a normal life again. I really hope
                                                                     the transplant was a success for them.'

                 'I was really surprised when
                   I got called up to say I was a
                   match but I was also excited
                   to be able to help someone.
                   It never once crossed my
                   mind that this was something
                   I didn’t want to do.'
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                        4
A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017
INTRODUCTION                                            THE STATE OF THE REGISTRY 2017

             The fifth annual review of the                          ALMOST 172,000 NEW        Over the past year, we have recruited almost 172,000 people to
                                                                                               the aligned registry. There are now more male donors and more
                                                                     POTENTIAL STEM
             Anthony Nolan and NHS Stem Cell                                                   black, Asian and minority ethnic (BAME) potential donors available
                                                                                               for patients than ever before. Our track record in recruiting greater
                                                                     CELL DONORS WERE          numbers of younger people to the registry continues, reflecting
             Registry represents a milestone                         MADE AVAILABLE            their importance.

             in the unique collaboration of the                      FOR TRANSPLANT            The total number of people on the register at the end of 2017
                                                                                               stands at a remarkable pool of more than 1.4 million – a pleasing
             partner organisations in stem                           PATIENTS IN THE UK        increase from 2016. In just five years, we have jumped from nearly
                                                                     AND WORLDWIDE             900,000 potential donors to add almost 550,000 more to the
             cell provision.                                                                   register.
                                                                     THANKS TO
                                                                     AWARENESS-                Our cord blood banks continue to grow as we invest in programmes
             Almost half a decade from the                                                     which provide an important source of stem cells for those in need
                                                                     RAISING AND DONOR         of a lifesaving transplant and for whom it can be more difficult to
             alignment of the UK registers,                          RECRUITMENT.
                                                                                               find a match.

             this report showcases the advances                                                We were pleased with the encouraging increase in the number
                                                                                               of UK provisions for UK patients in 2017 – a cornerstone of our
             we are making to ensure we can                                                    shared ambitions.

             find a match for every patient who                                                While this year has shown real progress, we must not lose momentum.
                                                                                               We still need to improve the balance of male and female donors
             needs a transplant.                                                               who we recruit to the aligned registry. Our evidence shows that
                                                                                               transplant centres prefer male donors and we must strive to meet
                                                                            Henny Braund       that demand.
             Altruistic stem cell donation for                              Chief Executive,
                                                                            Anthony Nolan
                                                                                               Our recruitment will continue to focus on ethnically diverse areas
             transplant potentially saves the                                                  and raise awareness among different ethnic communities.
                                                                                               We are all too aware of the inequality in donor provision between
             lives of over a thousand patients                              Ian Trenholm
                                                                            Chief Executive,
                                                                                               white Northern European and patients from BAME backgrounds;
                                                                                               a disparity which must change for the better as we continue to
                                                                            NHS Blood and

             with blood cancers or other blood                              Transplant         diversify the register.

             disorders in the UK every year.                                                   Young people play a pivotal role in the stem cell landscape.
                                                                                               Research identifies that younger donors offer the potential for
                                                                            Stephan
                                                                            Schumacher         better patient outcomes and a greater chance of survival.
                                                                            Chief Executive,
                                                                            DKMS UK            Happily, we have seen a significant increase in the number of
                                                                                               donors under 30 recruited in 2017.

                                                                                               Our collaborative strength will support us in meeting the challenges
                                                                            Cath O’Brien       of the future. Thank you to the Department of Health for its
                                                                            Director,
                                                                            Welsh Blood        continuing support, and to all our partners who enable us to help
                                                                            Service
                                                                                               more people in need of a stem cell transplant.

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                    5
A committed collaboration - The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017
KEY STATISTICS

                                                                1.4 million
                                                                                                                                                               433                             433 UK stem cell
                 1.4 m                                          plus potential stem                                                                                                            donors and 29 UK cord
                                                                cell donors on the                    19%                   19% of new stem cell
                                                                                                                            donors recruited were
                                                                                                                                                                                               blood units were provided
                                                                                                                                                                                               for UK patients in 2017
                                                                UK’s aligned registry
                                                                                                                            from an ethnic minority
                                                                                                                            background

                        2017
                                                                     Almost 172,000 new
                                                                     stem cell donors added to
                                                                                                         40%                   40% of new                                                       Over 2,700 new
                                                                     the aligned registry in 2017                              stem cell donors
                                                                                                                                                                                                UK cord blood units
                                                                                                                               recruited were male
                                                                                                                                                                                                were banked and made
                                                                                                                                                                 2,700                          available for transplant

                                                                                                    59% of new stem cell                               22,700
                                                                       59%                          donors recruited were
                                                                                                    under 30                                                                         There are now over 22,700
                                                                                                                                                                                     clinical grade cord blood units in
                                                                                                                                                                                     the NHSBT and Anthony Nolan
                                                                                                                                                                                     cord banks

                      44%
                                                                44% of UK patients were
                                                                helped by UK donors
                                                                                                                      2,200
                                                                                                                                                  More than 2,200 searches
                                                                                                                                                  for a lifesaving transplant were
                                                                                                                                                  conducted in 2017

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                                                                         6
HARDEEP’S STORY
                                                                     Hardeep Bains registered as a potential blood stem cell donor
                                                                     with DKMS in 2013. She was identified as a match for Ritesh
                                                                     Kukaeja, who had been diagnosed with thalassemia, a blood
                                                                     disorder, and needed a blood stem cell transplant. Hardeep
                                                                     donated her blood stem cells through a peripheral blood stem
                                                                     cell donation in January 2015, and the pair met for the first
                                                                     time in November 2017.

                                                                     'My heritage is Indian as my parents are from Delhi. There should
                                                                     be more Asians on the register because in our community, if we
                                                                     are looking for a donor the chances of finding a match is slim.

                                                                     'When I got the call to say "you’re a match for somebody', I was
                                                                     determined to do it no matter what. It was really important for me
                                                                     to donate because having kids myself, I could only imagine what
                                                                     the family were going through.

                                                                     'After I donated my blood stem cells, I knew it was one of the most
                                                                     amazing things I’ve done in all my life. My wish now is for Ritesh to
                                                                     live a great life and enjoy a bright future.'

                 'After I donated my blood stem
                   cells, I knew it was one of the
                   most amazing things I’ve done
                   in all my life. My wish now is for
                   Ritesh to live a great life and
                   enjoy a bright future.'
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                        7
THE REGISTRY TODAY

             The progress in the number and                                                                                             58% OF ALL UK DONORS   The total number of available stem cell donors now stands at
                                                                                                                                                               more than 1.4 million.
                                                                                                                                        SELECTED WERE
             composition of potential donors and cord                                                                                                          Research continues to show that younger stem cell donors
                                                                                                                                        YOUNG MEN AGED 30
             blood units (CBUs) on the aligned stem cell                                                                                AND UNDER
                                                                                                                                                               offer better patient outcomes, most recently in an international
                                                                                                                                                               study involving the Anthony Nolan Research Institute, published

             registry has been remarkable over these                                                                                                           in February 2018.*

             first five years of collaboration.                                                                                                                This evidence continues to be a key factor in influencing
                                                                                                                                                               overall donor recruitment to the aligned registry; in 2017, 59%
                                                                                                                                                               of donors recruited were aged 30 and under, compared to 55%
                                                                                                                                                               the previous year.
             In 2017, targeted donor recruitment and
                                                                                                                                                               We know that UK transplant centres prefer to select male
             awareness-raising by the registry partners –                                                                                                      donors and we are focusing on meeting that demand. In 2017, the
                                                                                                                                                               proportion of male donors recruited between the ages of 16 and
             Anthony Nolan, NHS Blood and Transplant,                                                                                                          60 remained stable at around 40%, representing 68,000 people.

             DKMS UK and the Welsh Bone Marrow                                                                                                                 There is still work to do to increase the proportion of new male
                                                                                                                                                               donors and we will continue to invest in targeted marketing
             Donor Registry – saw a total of 171,768 new                                                                                                       and recruitment.

             potential stem cell donors made available                                                                                                         We are ensuring young male donors with common tissue types
                                                                                                                                                               are typed to the highest resolution to provide transplant clinicians
             for transplant patients in the UK and across                                                                                                      with the information they need at the earliest stage in the search
                                                                                                                                                               for a donor.
             the world. This is marginally less than the
                                                                                                                                                               When it came to typing overall, 41% of donors in 2017 across the
             number of donors added to the register                                                                                                            aligned registry were typed to the highest possible resolution. This
                                                                                                                                                               represents an increase of 7% from 2016.
             the previous year.
                                                                                                                                                               In 2017, approximately 19% of new recruits to the register were from a
                                                                                                                                                               BAME background, down from around 26% in 2016. This drop is largely
                                                                                                                                                               down to patient appeal recruitment which was more reflective of the
                                                                                                                                                               general population in 2017. BAME recruitment remains critical if we are
                                                                                                                                                               to address the inequalities still faced by these patients when it comes
                                                                                                                                                               to finding a match, in comparison with those of a white Northern
                                                                                                                                                               European background.

                                                                                                                                                               Partnership working and a collective BAME focus in our
                                                                                                                                                               recruitment strategies will help shift the long-term picture
                                                                                                                                                               towards a registry which meets the needs of all patients.

                                                                     *Development of an Unrelated Donor Selection Score Predictive of
                                                                     Survival after HCT: Donor Age Matters Most, Shaw, Bronwen et al.
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017   Biology of Blood and Marrow Transplantation, February 2018.                                                                                                    8
PROVIDING UK DONORS
                                                                     Our ambition continues to be to provide more UK donors for
                                                                     UK patients.

                                                                     The year 2017 saw encouraging progress with an increase in the
                                                                     number of stem cell donors for UK patients: 433 UK donors for
                                                                     UK patients. This positive figure could be attributed to meeting
                                                                     the preferences of transplant clinicians and tissue-typing to an
                                                                     increasingly high level.

                                                                     Overall, 44% of UK patients were helped by UK donors, up from
                                                                     40% in 2016. However, there was a slight dip in the proportion
                                                                     of UK cords used for UK patients, down from 35% in 2016 to 29%
                                                                     in 2017.

                                                                     In 2017, 82% of people who went on to donate were male, and 58%
                                                                     were men aged 30 and under. A total of 69% of all male and female
                                                                     donors were under 30.

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                      9
CORD, THE STORY SO FAR

             In 2017, NHSBT and Anthony Nolan                        THE TOTAL NUMBER      The growth in Cord Blood Units (CBUs) banked over the last five
                                                                                           years now takes the overall total to over 22,700.
                                                                     OF UK CORD BLOOD
             continued to build on the long-                                               Over 2,700 new CBUs were made available for transplant in 2017.
                                                                     UNITS AVAILABLE FOR
             term development of their cord                          TRANSPLANT IS MORE
                                                                                           There were 29 UK cord provisions for UK patients – a drop on
                                                                                           the previous year – while the number of imported cords for UK

             programmes as an important part                         THAN 22,700.
                                                                                           patients remained relatively stable.

             of the stem cell transplant landscape.                                        The reduction in UK cord provisions for UK patients is down to a
                                                                                           combination of potential factors. These include an increase in
                                                                                           the number of paediatric patients who are more likely to receive a
                                                                                           single CBU and a reduction in the number of double cords to adult
             Cord blood stem cells remain a vital                                          patients, which reflects changes in medical practice. The 2015 UK
                                                                                           recommendations for cord selection – to support correct selection
             option for transplants, particularly                                          of the right type of unit, including single shipments in suitable cases
                                                                                           instead of double – are also likely to have had an impact. In addition,
             for black, Asian and minority ethnic                                          there is a greater international drive to increase the cell count
                                                                                           threshold for CBUs, meaning more patients could qualify for a single
             (BAME) patients and those with few or                                         cord blood transplant.

             no matches on the register.                                                   The Anthony Nolan and NHSBT Cord Support Programme,
                                                                                           launched in October 2017, is working to boost transplant centres’
                                                                                           confidence in using UK cords. This initiative has been well received,
             As they are banked, they also have                                            with three transplant centres now using the new CBU shortlisting
                                                                                           and quality checklist service. The programme also reinforces the
             the advantage of being immediately                                            UK recommendations on correct selection of CBUs.

             available for patients in urgent need
             of a transplant.

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                              10
ALIGNED REGISTRY 2017 DEMOGRAPHICS

NEW DONORS MADE ACTIVE

                                                                                                                                        TOTAL 171,768                                                                                  6,607
                                                                                                                                                                                                                                                                                                                NEW DONORS
                                                                                                                                                                   East East                                                          12,487
                                                                                                                                                                                                                                                       9,557
                                                                                                                                                                                                                                                                                                                BY REGION
                                                                                                                                                                   Wales Wales                                                     10,199
                                           MALE 40%                                                             FEMALE 60%                                         London London                                                                                             24,86016,274
       AGE                                                                                                                                                         IslandsIslands                693           812

                                                                                                                                                                         Scotland
                                                                                                                                                                   Scotland                                                                      8,846         20,318
      56–60                                                                                                                                                              Northern
                                                                                                                                                                   Northern IrelandIreland                2,239              4,561
                                                                             279       452                                                                               North East
                                                                                                                                                                   North East                                           2,9059,440
                                                                                                                                                                         North West
                                                                                                                                                                   North West                                                                    16,905             9092     14,797
                                                                                                                                                                         South East
                                                                                                                                                                   South East                                                                                   11,791
                                                                                                                                                                                                                                                                    22,917
       51–55                                                              2,431                      4,135                                                               South West
                                                                                                                                                                   South West                                                            6,884
                                                                                                                                                                                                                                     12,631
                                                                                                                                                                         East Midlands
                                                                                                                                                                   East Midlands                                                                 8,591
                                                                                                                                                                                                                                              15,250
                                                                                                                                                                         West Midlands
                                                                                                                                                                   West Midlands                                                     11,645    8,146
                                                                                                                                                                         Yorkshire
                                                                                                                                                                   Yorkshire       and Humber
                                                                                                                                                                             and Humber                                               6,250
                                                                                                                                                                                                                                 10,096
      46–50                                                          3,339                                   6,181                                                      Unknown/
                                                                                                                                                                   Unknown/ Other Other            2,088                                                                                                                        27,346

       41–45                                                      3,905                                              8,054                                                African
                                                                                                                                                                    African                     1,359 829                                                                                                        NEW DONORS
                                                                                                                                                                          African Caribbean     3,044  2,501                                                                                                     BY ETHNICITY
                                                                                                                                                                    African Caribbean
                                                                                                                                                                          East Asian
                                                                                                                                                                    East Asian                  1,469 732
                                                                                                                                                                          Hispanic
                                                                                                                                                                    Hispanic                    842      180
      36–40                                               7,074                                                                11,778                               JewishJewish                499      184
                                                                                                                                                                    MiddleMiddle Eastern
                                                                                                                                                                           Eastern              232       410
                                                                                                                                                                          Northern
                                                                                                                                                                    Northern       European
                                                                                                                                                                             European                                                                                                         139,889                                104,893
                                                                                                                                                                    Other Other                        7,542     5,390
       31–35                                          8,470                                                                        14,241                           Other Other European
                                                                                                                                                                          European               5,589          4,077
                                                                                                                                                                    SouthSouth
                                                                                                                                                                         Asian Asian                  8,960               12,913
                                                                                                                                                                    Unknown
                                                                                                                                                                         Unknown                 2,343 1,258

      26–30                               13,354                                                                                                 21,870

                                                                                                                                                                  African African                  86       47                                                                                                   CORD BY
                                                                                                                                                                                                                                                                                                                 ETHNICITY*
                                                                                                                                                                          African Caribbean
                                                                                                                                                                  African-Caribbean              41        31
                                                                                                                                                                                                                                                                                                                 ANTHONY NOLAN /
       21–25                     16,316                                                                                                         21,250                    East Asian
                                                                                                                                                                  East Asian                      56      17                                                                                                     NHSBT ONLY
                                                                                                                                                                  HispanicHispanic              18       8
                                                                                                                                                                  Jewish Jewish                 3        2
                                                                                                                                                                          Middle Eastern
                                                                                                                                                                  Middle Eastern                9          19
       16–20                               12,990                                                                                15,649                           Northern  European
                                                                                                                                                                          Northern  European                                                                                     1,599                                             1,537
                                                                                                                                                                  Other / Mixed
                                                                                                                                                                          Other / Mixed                                359 212
                                                                                                                                                                  Other European
                                                                                                                                                                          Other European          84              94
                                                                                                                                                                  South Asian
                                                                                                                                                                          South Asian                  315                   251
                                                                                                                                                                  Unknown Unknown                  144    78
    25,000           20,000            15,000           10,000         5,000       0         5,000             10,000        15,000         20,000       25,000

                                                                                                                                                                                                                                                                                 * Includes all searchable UK cords (including research grade)

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                                                                                                                                                                                          11
ALIGNED REGISTRY 2017 DEMOGRAPHICS

ALIGNED REGISTRY DEMOGRAPHICS                                                                                                                                        10,000,000

                                                                                                               TOTAL 1,432,810                                           9,000,000                                                                                                                       REGIONAL

                                          MALE 40%                                   FEMALE 60%                                                                          8,000,000
  AGE                                                                                                                                             UK Population
                                                                                                                                                                         7,000,000
 56–60                                     42,083                                            50,894

                                                                                                                                                  %                      6,000,000

                                                                                                                                                  Percentage of          5,000,000
                                                                                                                                                  Registered
  51–55             74,999                                                                                           99,457
                                                                                                                                                  Donors on the
                                                                                                                                                  Aligned Registry       4,000,000
                                                                                                                                                  Per UK Region
                                                                                                                                                                         3,000,000
 46–50                  74,135                                                                                            107,889
                                                                                                                                                                         2,000,000

                                                                                                                                                                         1,000,000
 41–45                           61,529                                                                             100,468                                                          1.3%         3.0%         2.5%       1.3%       2.5%      2.1%      2.0%       2.4%        2.1%       3.3%      2.0%         1.4%
                                                                                                                                                                                      East:       East        London:   N Ireland:   North     North    Scotland:    South      South      Wales:     West      Yorkshire & Unknown/
                                                                                                                                                                                     78,421     Midlands:     207,937    24,305       East:    West:     104,974     East:      West:     101,864   Midlands:    Humber:     Other:
                                                                                                                                                                                                137,695                              65,875   148,305               211,058    113,544               112,664      71,444     54,724

 36–40                       64,311                                                                                           112,838

                                                                                                                                                  African
                                                                                                                                                    African                            8,756
                                                                                                                                                                                         11,591                                                                                                     ETHNICITY
                                                                                                                                                  African Caribbean
                                                                                                                                                    African Caribbean                       23,337
                                                                                                                                                                                         20,847
                   75,326                                                                                                                         East Asian
                                                                                                                                                    East Asian                         4,052
                                                                                                                                                                                        7,085
  31–35                                                                                                                                 128,980
                                                                                                                                                    Hispanic
                                                                                                                                                  Hispanic                            350
                                                                                                                                                                                       3,817
                                                                                                                                                    Jewish
                                                                                                                                                  Jewish                                10,587
                                                                                                                                                                                         11,147
                                                                                                                                                    Middle
                                                                                                                                                  Middle    Eastern
                                                                                                                                                          Eastern                     1,827
                                                                                                                                                                                       2,338
 26–30         80,210                                                                                                               125,560         Northern  European
                                                                                                                                                  Northern European                                                                                                           1,128,829                             885,913
                                                                                                                                                    Other
                                                                                                                                                  Other                                    32,217 50,038
                                                                                                                                                    Other
                                                                                                                                                  Other    European
                                                                                                                                                         European                        16,556
                                                                                                                                                                                              27,195
                                                                                                                                                    South  Asian
                                                                                                                                                  South Asian                                  53,934 77,800
  21–25                   70,627                                                                                      104,514                       Unknown
                                                                                                                                                  Unknown                                           103,525
                                                                                                                                                                                                         89,583

                                                                                                                                                  African                                       1,104
                                                                                                                                                                                                                                                                                                    AVAILABLE CORD
                                                                                                                                                   African                                       752                                                                                                BY ETHNICITY*
 16–20                                                   23,916                     35,074                                                        African  Caribbean
                                                                                                                                                   African-Caribbean                    392
                                                                                                                                                                                        315                                                                                                         ANTHONY NOLAN /
                                                                                                                                                  East
                                                                                                                                                   EastAsian
                                                                                                                                                        Asian                        63 353                                                                                                         NHSBT ONLY
                                                                                                                                                  Hispanic
                                                                                                                                                   Hispanic                          28111
                                                                                                                                                  Jewish
                                                                                                                                                   Jewish                            1519
                                                                                                                                                  Middle
                                                                                                                                                   MiddleEastern
                                                                                                                                                           Eastern                    3654
      100,000       80,000           60,000         40,000    20,000   0   20,000   40,000   60,000   80,000    100,000
                                                                                                                                                  Northern
                                                                                                                                                   NorthernEuropean
                                                                                                                                                              European                                                                                                            14,493                                 15,724
                                                                                                                                                  Other
                                                                                                                                                   Other/ /Mixed
                                                                                                                                                            Mixed                                           2,651 3,009
                                                                                                                                                  Other
                                                                                                                                                   OtherEuropean
                                                                                                                                                          European                      337
                                                                                                                                                                                          475
                                                                                                                                                  South
                                                                                                                                                   SouthAsian
                                                                                                                                                          Asian                                              2,875        4,134
                                                                                                                                                  Unknown
                                                                                                                                                   Unknown                                    527 1,343

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                                                                                                                                                                                12
UK patient, UK CBU                                  25
                                                                                                                                                         UK patient, imported CBU                             33
STEM CELL PROVISION 2017

PROVISIONS FOR UK PATIENTS (MARKET SHARE)                                                                                                 TOTAL 1,131    UK PATIENTS HELPED                                                                                                                              TOTAL 1,039

UK patient, UK unrelated donor                                                                                           433                             UKpatient,
                                                                                                                                                        UK  patient,UK
                                                                                                                                                                     UKunrelated
                                                                                                                                                                        unrelateddonor
                                                                                                                                                                                  donor                                                                                                           385
                                                                                                                                                                                                                                                                                                   422
UK patient, imported unrelated donor                                                                                                      559            UKpatient,
                                                                                                                                                        UK  patient,imported
                                                                                                                                                                     importedunrelated
                                                                                                                                                                              unrelateddonor
                                                                                                                                                                                        donor                                                                                                                 534
                                                                                                                                                                                                                                                                                                               549
                                                                                                                                                         UKpatient,
                                                                                                                                                        UK  patient,UK
                                                                                                                                                                     UKCBU
                                                                                                                                                                        CBU                                   20                                          25
UK patient, UK CBU                                       29
                                                                                                                                                         UKpatient,
                                                                                                                                                        UK  patient,imported
                                                                                                                                                                     importedCBU
                                                                                                                                                                              CBU                                  48                                      33
UK patient, imported CBU                                      72

UK DONORS FOR UK PATIENTS                                                                                                                 TOTAL 433

                                               MALE 82%                                                             FEMALE 18%
    AGE                                                                                                                                                  UK DONORS FOR UK PATIENTS
                                                                                                                                                         SEARCH REQUESTS VS BLOOD SAMPLES REQUESTED
   56–60                                                                            0 0

                                                                                                                                                         Searches                                                                                                                       2,150                 36%
   51–55                                                                        3       1                                                               Searches                                                                                                                        2,241
                                                                                                                                                         Blood samples requested
                                                                                                                                                                                                                                                                                                29%        2,819
                                                                                                                                                        Blood samples requested                                                                                                                          3,017
   46–50                                                                   10               3
                                                                                                                                                         Blood samples shipped                                                                                            1,751                               35% 62%
                                                                                                                                                        Blood samples shipped                                                                                          1,745
   41–45
                                 OLD
                                                                          16                    6                                                                                                                                                               PERCENTAGES
                                                                                                                                                         Note: around 50% of searches result in the patient receiving a donation from either an unrelated adult or cord blood unit.
   36–40                                                              17                        6                                                        There is no correlation between the number of searches and donations in 2017.

   31–35                                            58                                              15
                                                                                                                                                         SUMMARY OF DONORS SELECTED FOR STEM CELL DONATION
   26–30                93                                                                                19

Northern
  21–25 European
            122                                                                                               374
                                                                                                              21                                          16-30  year
                                                                                                                                                           Fit Panel   old males
                                                                                                                                                                     16-30 year olds                                                                                                                       39% 58%
All other EGTs                            14                                                                                                              16-30   year
                                                                                                                                                           All other   old females
                                                                                                                                                                     16-30 year olds                                                   11%                      20%
    16–20                                                      36                               7
Unknown                                  7                                                                                                                 31-60 year
                                                                                                                                                          31-60  year olds
                                                                                                                                                                      olds                                                                                                        31%                         41%
                  100           80             60             40     20             0                    20         40         60     80          100

                                 NEW
UK DONORS FOR UK PATIENTS BY ETHNICITY                                                                                                    TOTAL 433      ALIGNED REGISTRY BY TYPING LEVEL
   African
African                                 2 1
   Asian
Asian                                   2 7                                                                                                                 A,B                                                     3.1%
                                                                                                                                                            A,B,C                                       0.0%
  Jewish
Jewish                                  1 3
                                                                                                                                                            A,B,C,DR                                                                                                                      22.9%
  Middle
Middle   Eastern
       Eastern                          1 0
                                                                                                                                                            A,B,C,DR,DQ                                                                                                 16.8%
  Northern
Northern   European
         European                                                                                                          393      365                     A,B,C,DR,DQ,DP                                                                                                                                   41.3%
  Other
Other                                   2     16                                                                                                            A,B,DR                                                                                               15.8%
  Other
Other   European
      European                          1 3                                                                                                                 A,B,DR,DQ                                   0.0%
  South
South   Asian
      Asian                              40
  Unknown
Unknown                                   7 10

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                                                                                                                                                                   13
SARAH’S STORY
                                                                     Sarah Dyce, a partner at EY from South London, has
                                                                     registered to donate cord blood three times at King’s when
                                                                     having each of her children, Lucas, four, Hayden, three, and
                                                                     Clara, one.

                                                                     ‘My friend’s father was diagnosed with leukaemia out of the blue
                                                                     and needed a stem cell donor – the fantastic news is that a match
                                                                     was found from umbilical cord blood. He’s recovering now and
                                                                     doing well and it really reinforced how important it was that we
                                                                     donated my cord blood.'

                                                                     Although Sarah and her husband came across scepticism
                                                                     when they told people they were planning to donate her cord
                                                                     blood, she said reading up on the process convinced her it was
                                                                     the right thing to do.

                                                                     ‘We did some research and felt comfortable that it wasn’t
                                                                     anything risky.’

                                                                     The blood, which is rich in potentially lifesaving stem cells, is taken
                                                                     after the cord has been clamped and would normally be thrown
                                                                     away. It is then banked and could be used at any point in the future

                 ‘At the time I barely
                                                                     in a stem cell transplant, if it is a match for a patient.

                                                                     ‘At the time I barely noticed it happening. It didn’t change anything

                   noticed it happening.
                                                                     about the way I gave birth and yet it could save someone’s life.’

                  It didn’t change
                  anything about the
                  way I gave birth and
                  yet it could save
                  someone’s life.’
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                        14
SCIENTIFIC PROGRESS

             The last five years have seen great                                                                                              THE NEW RESEARCH       By making it easier and quicker to establish and deliver clinical
                                                                                                                                                                     trials in stem cell transplantation, IMPACT aims to transform the
                                                                                                                                              PLATFORM IMPACT,
             strides in scientific advances relating                                                                                                                 ability of transplant centres to work collaboratively and develop
                                                                                                                                                                     even more effective treatments.
                                                                                                                                              JOINTLY FUNDED BY
             to stem cell transplantation. We now                                                                                             ANTHONY NOLAN,         Jointly funded by Anthony Nolan, NHS Blood and Transplant and

             know a great deal more about those on                                                                                            NHS BLOOD AND
                                                                                                                                                                     Leuka, patients taking part in clinical trials at 10 UK hospitals will
                                                                                                                                                                     be supported by dedicated research nurses.

             the register, and we have much more                                                                                              TRANSPLANT AND
                                                                                                                                                                     IMPACT will carry out a series of trials over the next three years
                                                                                                                                              LEUKA, HAS APPOINTED
             evidence around the key factors that                                                                                                                    in 22 hospitals to improve the care and treatment of patients
                                                                                                                                                                     receiving a stem cell transplant. It represents a significant
                                                                                                                                              DEDICATED RESEARCH     investment in improving patient care, ensuring that medical
             influence the matching process.                                                                                                  NURSES IN 10           advances reach patients more quickly, and will help fill the gaps
                                                                                                                                                                     in our current understanding. The first wave of trials will begin
                                                                                                                                              HOSPITALS TO SUPPORT   this year and we look forward to seeing their progress.
             While more lives are being saved than                                                                                            PATIENTS TAKING PART   This year, a pioneering study* involving the work of the Anthony
             ever before, we cannot be complacent.                                                                                            IN CLINICAL TRIALS.    Nolan Research Institute shed even more light on the key
                                                                                                                                                                     characteristics affecting stem cell transplant survival.
             Cutting-edge research plays a vital role
                                                                                                                                                                     The research suggests that after HLA matching, the age of a stem
             in achieving more positive outcomes                                                                                                                     cell donor is the most important characteristic influencing patient
                                                                                                                                                                     survival following a stem cell transplant. The aim was to produce a
             for patients, and must go hand-in-hand                                                                                                                  definitive hierarchy of donor characteristics and how they affect
                                                                                                                                                                     patient survival to allow transplant clinicians to be confident when
             with collaboration with transplant                                                                                                                      selecting a donor for a patient with multiple matching donors.
                                                                                                                                                                     The younger the donor, the more likely the patient is to survive.
             centres to develop increasingly effective
                                                                                                                                                                     These results are extremely significant for transplant clinicians
             approaches to treatment.                                                                                                                                who have patients with multiple HLA matches, allowing clinicians
                                                                                                                                                                     to prioritise younger donors to maximise the chances of patient
                                                                                                                                                                     survival. More research is needed to determine how important
             A new clinical trials partnership, IMPACT,                                                                                                              different donor factors are on outcomes other than patient survival.

             was launched in November 2017 to
             bridge this gap.

                                                                     * The international study involving the Anthony Nolan Research
                                                                     Institute was led by the International Centre for Blood and Bone
                                                                     Marrow Transplant Research, Wisconsin. More than 10,000
                                                                     unrelated stem cell transplants were analysed. A paper relating
                                                                     to the study, ‘Development of an Unrelated Donor Selection Score
                                                                     Predictive of Survival after HCT: Donor Age Matters Most’ by Shaw,
                                                                     Bronwen E. et al. was published online in the journal Biology of Blood
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017   and Bone Marrow Transplantation in February 2018.                                                                                                                        15
IOAN’S STORY
                                                                     A rugby player who joined the Welsh Bone Marrow Donor
                                                                     Registry at 17 helped kick blood cancer into touch after
                                                                     donating his lifesaving bone marrow to a young boy from
                                                                     America years later. Ioan Evans was one of the only suitable
                                                                     matches in the world capable of saving the patient, despite
                                                                     the pair living thousands of miles apart.

                                                                     'After finding out I was a match, the Welsh Blood Service told me
                                                                     the bone marrow was for a little boy living in America. Finding
                                                                     that out was really heart-warming and it gave me the motivation
                                                                     throughout the process.

                                                                     'I donated in December so I thought it would be one of the best
                                                                     Christmas presents this young child would ever receive.

                                                                     'It was pretty straight forward. After the operation, I actually woke
                                                                     up and asked if they’d done it yet because I couldn’t feel any pain.

                                                                     'Joining is really easy to do, and I’m so glad that I did. I’ve changed
                                                                     someone’s life because of it.'

                 'Joining is really easy to do,
                  and I'm so glad that I did.
                  I've changed someone's life
                  because of it.'
The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                         16
From strength                                           Almost 172,000 new potential stem
                                                                     cell donors were made available for
             to strength                                             transplant patients in the UK and
             The Anthony Nolan and NHS Stem Cell Registry            worldwide thanks to awareness-
             Annual Review of 2017
                                                                     raising and donor recruitment.

                                                                     Anthony Nolan           DKMS UK                 NHS Blood and Transplant   Welsh Blood Service
                                                                     2 Heathgate Place       Ashburnham House        Oak House,                 Ely Valley Road,
                                                                     75-87 Agincourt Road    Castle Row,             Reeds Crescent             Pontyclun,
                                                                     London                  Horticultural Place,    Watford, Hertfordshire     Mid Glamorgan
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                                                                     anthonynolan.org        dkms.org.uk             nhsbt.nhs.uk               welsh-blood.org.uk
                                                                     0303 303 03 03          020 8747 5620           0300 123 23 23             0800 252 266

                                                                     Registered charity no   Registered charity no
                                                                     803716/SC038827         1150056
                                                                     1257CM

The Anthony Nolan and NHS Stem Cell Registry Annual Review of 2017                                                                                                    17
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