U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center

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U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center
Spring 2018                                                                                       In this issue:
                                                                                                   • Students develop device for Project
                                                                                                   SEARCH graduate to increase productivity
                                                                                                   • Catalog of patient library resources
                                                                                                   now accessible online

                                                                               NIH...Turning Discovery Into Health®

U.S. Navy Captain Pius Aiyelawo joins                                                      Patient with rare disease
Clinical Center as chief operating offcer                                                  receives surprise visit
                                                                                           from bone marrow donor
                                                                                           What would you say to the person who saved
                                                                                           your life? A young man at the NIH Clinical Cen-
                                                                                           ter faced this very question early in 2018 when
                                                                                           he met the person who donated bone marrow
                                                                                           to treat his life-threatening illness.
                                                                                               Jackson Taylor has been a patient at the Clini-
                                                                                           cal Center since 2010, when he was just 10-years-
                                                                                           old. At that time, he came to participate in a trial
                                                                                           for patients with immunodefciency diseases.
                                                                                               Over the course of several years, researchers
                                                                                           at the NIH kept a close eye on Taylor’s condition.
                                                                                           His immune system did not function properly –
                                                                                           he often had severe and frequent infections and
                                                                                           illnesses. The care team eventually identifed a
                                                                                           defect in a gene called magnesium transporter
                                                                                           1 or MAGT1. In 2014, the research team made
Pius Aiyelawo, Clinical Center chief operating offcer, (left) was sworn into the Senior    an even larger scientifc discovery – they identi-
Executive Service, by Dr. Lawrence Tabak, NIH principal deputy director.                   fed and named a new rare disease that affect-
In April, retired U.S. Navy Captain Pius     inspire both patients and staff,” said        ed Taylor and a handful of other patients. The
Aiyelawo joined the Clinical Center as the   Dr. Jim Gilman, Clinical Center CEO.          disease is an X-linked immunodefciency with
chief operating offcer. Aiyelawo is the          Aiyelawo has held senior leadership       magnesium defect, Epstein-Barr virus infection,
frst COO to oversee clinical areas in        positions in hospitals and large medi-        and neoplasia – known as XMEN.
addition to the administrative side.         cal research programs throughout a                This previously unrecognized disease brought
   ”Pius’s tremendous healthcare             distinguished military career spanning        Taylor back in 2016 to enroll in a National Can-
leadership experience is matched only        over 27 years. Read more in the news          cer Institute (NCI) bone marrow transplant trial.
by a positive energy and spirit that will    release: https://go.usa.gov/xQbTM                 “When Jackson was found to have rapidly
                                                                                           expanding lymphatic tissues following exposure
                                                                                           to Epstein-Barr virus, the need for bone marrow
Frosting cookies and making cards, patients share                                          transplant became urgent,” added Dr. Gulbu
Valentine’s Day with First Lady Melania Trump                                              Uzel, an immunologist and staff clinician with
                                                                                           the National Institute of Allergy and Infectious
                                                                                           Diseases (NIAID).
                                                                                               While most people have Epstein-Barr virus
                                                                                           already in their body, they’ll never see side ef-
                                                                                           fects because their immune system keeps it under
                                                                                           control. But for patients like Taylor, whose immune
                                                                                           system is not working properly, Epstein-Barr virus
                                                                                           would likely lead to cancers of the immune system.
                                                                                               “A bone marrow transplant is a potential
                                                                                           cure for immunodefciency diseases,” said Dr.
                                                                                           Jennifer Kanakry, one of Taylor’s care providers
                                                                                           from the NCI. During a transplant, a patient
                                                                                           receives healthy blood-forming cells (stem cells)
                                                                                           to replace their own stem cells.
                                                                                               Taylor turned to the NIH’s Unrelated Donor
                                                                                           Stem Cell Transplant Program. In 2017, nearly
                                                                                           30 unrelated donor transplants took place in
                                                                                           Building 10, which was about 40% of all trans-
                                                                                           plants done at the NIH that year.
                                                                                               Jennifer Wilder, primary coordinator for the
                                                                                           program, works with patients’ clinical research
                                                                                           teams, the Clinical Center’s Department of Trans-
First Lady Melania Trump celebrated Valentine’s Day with pediatric patients at The         fusion Medicine and Be The Match – the man-
Children’s Inn at NIH. View the live stream videocast of the First Lady’s visit and the    ager of the largest marrow registry in the world.
full story at CC News online: https://go.usa.gov/xQaew                                                                            DONOR page 2
U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center
Staff, need to access DONOR from page 1
electronic health     She coordinates donor details, plans for
                      the marrow harvest and schedules the
records? Use the      patient’s infusion of cells.
                         Taylor’s transplant followed the
online request form! collaborations across the NIH: he was
                      usual pattern of the many research

The Clinical Research Information System                     cared for by the NCI’s Experimental
(CRIS) – NIH’s electronic health record –                    Transplantation and Immunology
touches virtually everyone at the Clinical                   Branch with involvement from experts
Center in one way or another, including                      at the NIAID and the Clinical Center.
staff from 17 NIH Institutes who work in                         In September 2016, Wilder found
                                                             a match for Taylor. Sean McLaugh-
Building 10. The Department of Clinical Re-                  lin, a 22-year old from New England,
search Informatics, the team that manage                     was willing to make a bone marrow
the Clinical Center’s IT systems, including                  donation and his blood type, among
CRIS, recently updated the form staff use to                 other factors, matched Taylor’s needs.
request access to this important system.                     McLaughlin traveled to D.C. to donate
    When a student, trainee or other staff                   his marrow Dec. 21, 2016 and it was          A year after his bone marrow transplant, Jackson
(who are not medical prescribers) join the                   infused into Taylor a few hours later.       Taylor (right) meets his donor Sean McLaughlin (left).
NIH, often they need to request access to                        “Going through a transplant is a
CRIS as part of their job. Whether it is to                  process,” said Kanakry. After his mar-            priceless,” said Wilder. “It’s also incredibly
document patient care, retrieve data or                      row graft was given that December day,            important to highlight things like this for
analyze trends, NIH staff need to access                     “there is a long process of preventing graft our staff – the research teams as well as the
clinical and research information to assist                  versus host disease, preventing infection,        Clinical Center staff who care for patients
in their work and help achieve the mission                   waiting for the blood counts to come back every day. I am really pleased that we could
of the NIH to improve the health of the na-                  up from zero and slowly building up an            share a success story with them, and also
tion. The NIH carefully evaluates CRIS access                entirely new, healthy immune system.”             highlight the donor in a way that made his
requests to ensure safeguards are in place                       The transplant, delivered by IV, may          sacrifce and gesture real to everyone.”
                                                             have taken only a few hours, but the story             The visit made a real impact.
that protect patient’s medical information.
                                                             didn’t end there.                                      “Meeting Sean, my bone marrow donor,
    These are the recent updates to the                                                                        was crazy largely due to the fact that I
                                                                 According to the Be The Match bone
electronic CRIS Account Request Form                         marrow registry rules, unrelated donor            didn’t know he was going to meet me in
(also known as eCARF):                                       transplants are anonymous to the NIH care         the hospital. When we came face to face, it
• The employee’s supervisor should fll out                   providers and the patient for at least one        was like meeting a long-lost brother I never
and electronically sign the electronic CRIS                  year following the transplant. So Taylor and      knew I had. The amount of emotions was
Account Request Form (https://cris.cc.nih.                   McLaughlin corresponded anonymously               overwhelming, I wasn’t sure what to say.
gov/accounts/pdf/CARF.pdf) using their                       over the next year. The frst letter they          Spending the day together and getting to
PIV card and click ‘Submit Form’ (applicant                  wrote was on the day of the transplant.           know him was amazing,” said Taylor.
signature not required).                                         “I think in total we wrote about eight             “Knowing that there were two people
• Once ‘Submit Form’ is selected, it will be                 letters back and forth to each other,”            in that room who had never met, but
automatically forwarded to a new email                       recounted Taylor. “Even though words on           share the same DNA was a profound and
address of the CRIS Security team:                           paper weren’t fully able to express my emo- amazing feeling,” added McLaughlin.
crisaccessrequests@cc.nih.gov                                tions, it was extremely helpful to express my          Taylor’s experiences haven’t ended with
• The electronic CRIS Account Request                        gratitude for my donor’s sacrifce.”               meeting McLaughlin. A Canadian citizen,
Form specifes access type based on user                          McLaughlin remembered, “I couldn’t            Taylor is now a volunteer for the Canadian
roles. Select the employee's role based on                   have been happier each time he sent a             Blood Services, the main organization that co-
their NIH credentialing status, job function                 letter telling me how well he was doing. It       ordinates blood donations and recruits bone
                                                             made me realize that everything I did was         marrow donors in Canada. He plans to work
and need to know.                                                                                              on events that educate and inspire people to
                                                             worth it. It actually worked!”
    The form should be submitted prior to                        On Jan. 5, 2018, they were fnally able        donate blood and register for bone marrow
taking CRIS training, with the exception of                  to meet face to face. Taylor was at the           donation. “It really does save lives,” he said.
credentialed prescribers (M.D., P.A., N.P.,                  Clinical Center for his one-year transplant            As for McLaughlin, he found donating
D.O., Dentists, Audiologists). Register online               follow-up visit. But to his surprise, Wilder      marrow to be incredibly powerful.
for CRIS training: https://                                  had worked with Taylor’s transplant team,              “For many patients, a bone marrow do-
training.cit.nih.gov/. View more details                     his social worker and his family to arrange       nation is the last resort or only option,” he
(https://cris.cc.nih.gov/accounts/index.html)                for him to fnally meet McLaughlin.                said. He encouraged others to join a donor
or watch the CRIS video (https://youtu.be/                       “I loved bringing the patient and donor       registry. “Knowing that you are the only
WxqHan1xCto).                                                together, and seeing the family’s reaction was    reason someone is alive is remarkable.”

Read more online! Scan the barcode or visit                          Clinical Center News
www.cc.nih.gov/about/news/newsletter.html                            Editor: Molly Freimuth                          Published monthly by the Offce of Communications
                • Health & Human Services Secretary, Alex                                                            and Media Relations, Justin Cohen, chief
                                                                     Contributors: Deborah Accame, Lester Davis,
                Azar, meets with patients, NIH staff in March        Cindy Fisher, Donovan Kuehn,                    News, article ideas, calendar events and photos are
                • National Eye Institute turns 50                    Maria Maslennikov, Angela Missouri              welcome. Submissions may be edited.
                • Dr. Jerome Adams makes frst NIH visit as
                                                                     National Institutes of Health Clinical Center
                20th U.S. Surgeon General                            10 Center Drive, Room 6-2551                    Contact: 301-594-5789
Use a downloaded app on a smartphone or tablet to scan the Quick     Bethesda, MD 20892-1504                         Molly.Freimuth@nih.gov
Response (QR) barcode. You will be directed to the CC News online.
 2 Clinical Center news Spring 2018
U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center
Poolesville High School students develop device for
Project SEARCH graduate to increase productivity
Thanks to the bright minds of         to Ricky, we were inspired              students designed a specialized
three local high school stu-          by his positive attitude and            tray that could hold and align
dents, NIH Clinical Center em-        determination to complete his           the documents. After placing
ployee Ricky Day has been able        tasks independently, regard-            them in the tray, Day can slide
to use a new device that has          less of how diffcult they may           an envelope onto the device,
helped him more than double           be,” said Alex Carbonell. He,           surrounding the paper. Finally,
his productivity in the Offce of      along with his classmates               using the handles, Day can tilt
Administrative Management.            Dhruv Maniktala and Ashwini             the device to allow the paper
    Day, who graduated from NIH       Thirukkonda, are involved in            to slip into the envelope.
Project SEARCH in 2011, is in         the Science, Mathematics, and               Traveling back and forth
charge of processing patient taxi     Computer Science program at             from school to the NIH over
voucher receipts and invoices. By     Poolesville High School. As a           several months, the students
entering the receipt amounts into     part of the program, they were          brought updated prototypes
an Excel spreadsheet, he is able      required to fnd an opportunity          and tweaked it according to
to compare the charged amount         to apply their knowledge from           feedback from Day.                  Ricky Day, front, holds the prototype
to the travel time – checking         the course in the community.                “As we’ve worked with           device designed for him by the three
                                                                                                                  students from Poolesville High School.
for possible discrepancies or             “Despite our limited experi-        Ricky, we’ve seen just how
overcharges. As part of this, Day     ence in the engineering feld,           hardworking and optimistic he       more than doubled his produc-
has to take documents in and          we wanted to help Ricky be-             is. Ricky’s also a problem-solver   tivity, which will impact the Clin-
out of a manila envelope. The         come more confdent, indepen-            in his own right, and his ideas     ical Center and its patients. Still,
task of placing the large stack of    dent and productive. With this          and suggestions have driven our     the best thing would have to be
papers back into the envelope is      in mind, we set out to build an         design process,” Thirukkonda        seeing Ricky’s face light up after
especially challenging due to         assistive technology for him,”          said. “It’s also been amazing to    he’s used a new prototype [of
his limited dexterity.                Maniktala said.                         see just how much our simple,       the device], and knowing that
    “After being introduced               To solve the problem, the           and inexpensive device has          our work made that happen.”

Let’s move with heart: NIH staff celebrate                                                          Catalog of patient
American Heart Month in February                                                                    library resources now
                                                                                                    accessible online
                                                                                                    The Clinical Center patient library catalog
                                                                                                    recently went digital – NIH patients, their fam-
                                                                                                    ily members and caregivers can now go online
                                                                                                    from any computer, tablet or mobile device to
                                                                                                    browse and reserve more than 7,000 available
                                                                                                    items. Previously, the catalog was only acces-
                                                                                                    sible to those who traveled to the 7th foor
                                                                                                    to conduct a search. Now users can review
                                                                                                    materials at home and hold them for when
                                                                                                    they arrive. If they’re already in the hospital,
                                                                                                    guests can use their bedside TV/Tablet.
                                                                                                        The Patient Library offers books, audio
                                                                                                    books, music, DVDs and XBOX 360 games.
                                                                                                    They subscribe to over 30 magazines and
                                                                                                    have newspapers available, too. Laptops,
                                                                                                    tablets and musical instruments are on hand
                                                                                                    for check out. The library recently added the
                                                                                                    three-part Discovery series First in Human,
NIH staff flled the Clinical Center atrium Feb. 2 — known as Wear Red Day — to celebrate
                                                                                                    which aired in August 2017, to their tablets.
American Heart Month. Coordinated by the National Heart, Lung, and Blood Institute (NHLBI),         The series captures the real-life experiences of
attendees line danced for 30 minutes at the event to raise awareness of heart disease, which is     doctors, researchers, staff, patients and their
the number one killer of both men and women in America. Research shows that being physi-            caregivers at the Clinical Center. Ask a librar-
cally active can help lower the risk of heart disease and stroke. At the event, Dr. Gary Gibbons,   ian to access the show, or, inpatients can call
NHLBI director, invited everyone to move more often. “You can change the way you live, how
you eat, how you become more active!” Attendees were encouraged to record a short video             301-451-7603 and staff can make arrange-
demonstrating their favorite way to move, and share it on Twitter and Instagram, using #Move-       ments to bring a tablet to the bedside.
WithHeart. View videos from staff in the Clinical Center: www.movewithheartpledge.com                    Visit the catalog: https://go.usa.gov/xQrnT
                                                                                                         Spring 2018 Clinical Center news 3
U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center
Personnel updates
Laboratory Medicine                  Nursing                            Surgery                               Clinical Research Training
                    After a                             Dr. Gwenyth                        In December,                      & Medical
                    distinguished                       Wallen was                         Dr. Jeremy                        Education
                    35-year-                            named Chief                        Davis was
                    career at                           Nurse of the                       named Sur-                            Dr. Thomas
                    the Clini-                          Clinical Cen-                      geon-in-Chief                         Burklow has
                    cal Center,                         ter Nursing                        at the Clinical                       joined the
                    Dr. Thomas                          Department                         Center. Davis                         NIH to lead
                    Fleisher re-                        in December                        oversees all                          the Medi-
                    tired as Chief                      2017. Wal-                         surgical activi-                      cal Research
of the Department of Labora-         len has served as the interim      ties, provides strategic planning     Scholars Program, a year-long
tory Medicine at the end of          chief nurse since late 2016. In    for surgical care and works to        program that competitively
2017. Fleisher was in charge of      this role, she is the hospital’s   improve surgical quality and          selects about 40 medical,
diagnostic testing for inpatient     senior nursing executive re-       safety protocols throughout the       dental and veterinary stu-
and outpatients that involved        sponsible for nursing practice,    hospital. Each year at the Clini-     dents seeking future careers
chemistry, hematology and mi-        standards, policies and profes-    cal Center, more than 2,200           in biomedical research to join
crobiology testing. His depart-      sional development of the          operations are performed by           laboratories on the Bethesda
ment also provides phlebotomy        more than 600 nurses practic-      over 40 senior surgical staff.        campus to engage in ba-
services. He served as depart-       ing in the Clinical Center.            Davis will work with Clinical     sic, clinical or translational
ment head since 1998.                    She provides national and      Center staff, including those         research.
    “[He] has been one of the        global leadership within the       in the Department of Periop-              Prior to NIH, Burklow
principle reasons why the Clini-     clinical research enterprise.      erative Medicine, to ensure           served as a senior attend-
cal Center is the superb facility    Wallen remains focused on          that NIH continues to provide         ing pediatric cardiologist at
that it is,” said longtime col-      developing this specialized        the highest level surgical care       Walter Reed National Military
league, Dr. Henry Masur, Chief       nursing role and disseminat-       to patients. During his frst          Medical Center where he also
of the Critical Care Medicine        ing information, education         year, he will focus on central-       served as Chief of Pediatrics.
Department. “He has been an          and innovations on safety and      izing surgical outcomes data,         In addition to his duties with
unsung hero of the intramural        quality nursing care delivery      improving perioperative ef-           the Medical Research Scholars
program’s success.”                  and clinical research practice.    fciency and providing risk-as-        Program, he will continue to
    Effective January 2018,          Wallen is a newly Tenured Se-      sessment for clinical research-       use his expertise and serve
Dr. Karen Frank assumed the          nior Investigator and Chief of     related procedures. He is also        as a pediatric cardiologist for
responsibilities of Acting Chief     Nursing Research and Transla-      a Surgical Oncologist in the          the Clinical Center’s youngest
of the department.                   tional Science.                    National Cancer Institute.            patients.

Starbucks                            Frasca, architect and designer of the north part of Building 10, dies
                                     Robert Frasca, a founding design   tion, added “[Frasca]
marketplace                          partner responsible for creating   quickly grasped our
                                     the north side of Building 10,     mission. Aside from
cafe opens                           known as the Mark O. Hatfeld       [his] great design skills,
                                     Clinical Research Center (CRC),    he had a remarkable
                                     died Jan. 3. Frasca, 84, worked    ability to listen and
                                     for Zimmer Gunsul Frasca           respond to our stake-
                                     Architects, the frm selected       holders. He grasped
                                     from an international design       how patients and their
                                     competition in 1996 to design      families react to a seri-
                                     the CRC. The 870,000-square-       ous illness. He under-
                                     foot addition, which opened in     stood the stress care
                                     2005, has 200 inpatient beds       providers and scien-
                                     and 93 day-hospital stations.      tists face. With good
                                         To Frasca, working at the      humor, optimism,           Harold Varmus, Robert Frasca, Mark Hatfeld
                                     Clinical Center was more than      inclusiveness and          and John Gallin at the groundbreaking of
                                     just a job.                        sensitivity [he] became the hospital’s new addition.
                                         “He loved scientists and       a friend of the NIH.                 emotional investment you have
The Clinical Center Starbucks        [doctors] and felt they were           In 1997, Frasca spoke before in the building, the better build-
Marketplace opened Feb. 2. The       doing God’s work and he was        an audience of Clinical Center       ing it’s going to be,” Frasca said.
cafe, which sits where the former    only providing the cathedrals      researchers and staff about the          Frasca’s portfolio includes
Au Bon Pain was located, offers      for it all to happen,” Frasca’s    importance of their input when       Doernbecher Children’s Hospital
pastries, muffns and cookies as                                                                              in Portland, Ore.; the Memorial
                                     wife, Jeanne Giordano, said        designing the new facilities.
well as hot and cold beverages.
Patients, staff and visitors can     recently to John Gallin, NIH’s         “We really believe that a        Sloan Kettering Cancer Cen-
enjoy hot meals and additional       associate director for clinical    good science building can            ter’s Mortimer B. Zuckerman
snacking options. For more infor-    research and chief scientifc of-   contribute to good science. In       Research Center in New York;
mation, contact John Crawford,       fcer of the Clinical Center.       designing this building, it is a     and the Dana-Farber Cancer
an NIH food services program             Gallin, who was the Director   partnership. We literally learn      Institute’s Yawkey Center for
manager, at 301-402-8180.            of the hospital during renova-     from one another. The more           Cancer Care in Boston.
  4 Clinical Center news Spring 2018
U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center
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