Sirpa Pietikäinen MEP - signs the #DementiaPledge2019 and becomes Chairperson of the European Alzheimer's Alliance - Alzheimer Europe
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Issue 30
June 2019
Sirpa Pietikäinen MEP
signs the #DementiaPledge2019
and becomes Chairperson of the
European Alzheimer’s Alliance
Alejandro Moledo Jayne Goodrick Petri Lampinen
talks about the European Disability Forum’s receives a “Points of Light” award for her advocacy shares his thoughts on the new
campaign for equal voting rights work for people with dementia and carers European Disability Card
TABLE OF CONTENTS
Contents
3 Welcome Contact
by Iva Holmerová, Chairperson of Alzheimer Europe Alzheimer Europe
14, rue Dicks
Alzheimer Europe L-1417 Luxembourg
+352 29 79 70
4 European Parliament lunch debate focuses on dementia as a European research +352 29 79 72
priority www.alzheimer-europe.org
info@alzheimer-europe.org
7 Snapshots from Alzheimer Europe’s European Parliament lunch debate
@AlzheimerEurope
8 Bringing together assessment of functioning and technology in Alzheimer’s disease: alzheimer.europe
how can people affected by AD contribute?
11 Why IMI PARADIGM?
14 AETIONOMY – towards a taxonomy for neurodegenerative diseases
16 Looking back at Alzheimer Europe’s #DementiaPledge2019 campaign
18 European Working Group of People with Dementia supports Alzheimer Europe’s
Dementia Pledge campaign Board
Chairperson: Iva Holmerová (Czech Republic)
Vice-Chairperson: Charles Scerri (Malta)
Policy Watch Honorary Secretary: Jim Pearson (UK –
Scotland)
21 European Parliament elections and campaign results – what now? Honorary Treasurer: Maria do Rosário Zincke
dos Reis (Portugal)
23 European Disability Forum campaigns on voting rights for persons with disabilities Members
Helen Rochford-Brennan, Chairperson of the
25 Implementing the WHO Global Action Plan on dementia European Working Group of People with
27 Spanish Minister outlines the content of the country’s National Alzheimer’s Plan Dementia (Ireland)
2019–2023 Stefanie Becker (Switzerland)
Marco Blom (Netherlands)
29 European research landscape set for significant changes following agreements and Sabine Jansen (Germany)
reorganisation Pat McLoughlin (Ireland)
Sirpa Pietikäinen (Finland)
Jesús Rodrigo (Spain)
Dementia in Society Karin Westerlund (Sweden)
31 Dementia carers should have better support and more recognition Staff
Jean Georges, Executive Director
36 Alzheimer Scotland highlights inequities in access to care Christophe Bintener, Project Officer
Cindy Birck, Project Officer
38 What does accessibility mean for people with cognitive disabilities? Kate Boor Ellis, Communications Officer
40 French families hit hard by government’s decision to stop reimbursing anti-dementia Angela Bradshaw, Project Officer
drugs Ana Diaz, Project Officer
Dianne Gove, Director for Projects
42 Finland holds first ever Memory Parliament Gwladys Guillory, Event and Conference
Coordinator
Owen Miller, Policy Officer
Aideen O’Brien, Administrative Assistant
Stefanie Peulen, Finance Officer
Grazia Tomasini, Administrative Assistant
Layout: The Publishing Bureau
Photo credits
WHO
EFPIA
European Parliament
European Commission
European Disability Forum
Spanish Ministry of Health
Dementia Carers Count
2 Dementia in Europe
WELCOME
Welcome
for chairing the debate itself; Heinz K. Becker shared with us his experience of using the
MEP (Austria) who participated; and also Mar- new European Disability Card.
tina Anderson MEP (UK, Northern Ireland)
who was represented at the meeting. It has also been an active time for different
carers’ networks across Europe, with net-
The Policy Watch section opens with a works across the UK, Ireland and Portugal
summary of the results of the European Par- working on various projects to improve the
liamentary elections, how many candidates experience of carers of people with demen-
signed the pledge (and how many of those tia. So effective has this been in Wales, that
were elected), the number of members now in Jayne Goodrick (who supports EWGPWD
the European Alzheimer’s Alliance, as well as member Chris Roberts) has received an
the intended next steps of Alzheimer Europe award recognising her tireless campaign-
Iva Holmerová, Chairperson of Alzheimer Europe
in engaging with policy makers. ing work in ensuring the voices of carers are
It is with great pleasure that I welcome you heard. I warmly congratulate her on this great
to the 30th edition of our Dementia in Europe We have an interesting article from the Euro- achievement. Having been a carer myself, I
magazine. pean Disability Forum which has shared know how hard it is. I am so impressed with
how it approached the elections, campaign- the work that these carers’ networks, and the
The first section gives an overview of some ing against barriers, both legal and physical, individuals that belong to them, are doing.
of the work in which Alzheimer Europe has which prevent or restrict persons with disabil-
been involved, including our work on three ities from voting across Europe. Additionally, Our French colleagues have been continu-
different research projects (RADAR-AD, PAR- we are pleased to have a contribution from ing their campaign against the decision of
ADIGM and AETIONOMY). We also provide a colleagues Dan Chisholm and Katrin See- the French Government to stop reimburs-
look into how we approached the European her, from WHO Europe and the World Health ing dementia medication. France Alzheimer
Parliament elections and an introduction to Organization respectively. They focus on President Joël Jaouen tells us about a recent
the new members of the European Working the progress and future work on the Global survey showing the hugely negative impact
Group of People with Dementia (EWGPWD). Action Plan for Dementia. this 2018 decision has already had on peo-
I would like to thank them for their involve- ple with dementia and their families across
ment in our election campaign, without We then examine the most recent devel- the country.
which we would not have been so success- opments in relation to a significant policy
ful in getting MEP candidates to commit to area for dementia research, Horizon Europe, Concluding this edition of the magazine,
making dementia a priority. before briefly providing an overview of the Jim Pearson from Alzheimer Scotland talks
latest Brexit developments and their implica- us through their campaign on care charging
We also take a look back to February 2019 at tions for different aspects of European policy for people with advanced dementia, follow-
our lunch debate in the European Parliament and practice. We conclude this section on a ing the publication of a report by a dedicated
which focused on dementia research as a positive note, with the announcement by the commission examining the issue.
European priority. Attendees heard presenta- Spanish Government, which has provided
tions from Pierre Meulien of the Innovative an outline of the main areas of focus for its I would like to wish you all the very best for
Medicines Initiative (IMI), setting out how forthcoming National Alzheimer’s Plan. the summer and look forward to welcoming
the partnership had supported dementia you for our next edition in October in which
research; Mikko Hiltunen of the University Our Dementia in Society section covers a we will be previewing our annual conference,
of Eastern Finland, who shared some of the range of policy-related activities in which our which will take place in The Hague, Nether-
work being done in relation to the genet- members have recently been engaged. Our lands, between 23 and 25 October 2019.
ics of dementia; and from Stéphane Hogan Finnish colleagues have been busy in a num-
of the European Commission, who detailed ber of areas, with Muistiliitto (The Alzheimer Happy reading!
how the Commission had provided resources Society of Finland) organising the country’s
and a strong framework to support demen- first ever “Memory Friendly Parliament”, at
tia research in Europe. I would like to thank which people with dementia and carers were
Sirpa Pietikäinen MEP (Finland) for organis- able to ask MPs questions. Additionally, Finn-
ing the meeting; Anneli Jäätteenmäki MEP ish EWGPWD member Petri Lampinen has
Dementia in Europe 3
ALZHEIMER EUROPE
European Parliament lunch
debate focuses on dementia as
a European research priority
Alzheimer Europe and the European Alzheimer’s Alliance
organised a lunch debate in the European Parliament, hosted
by Anneli Jäätteenmäki MEP.
Alzheimer Europe (AE) held its first lunch (2014–2020), highlighting that the public-pri-
debate of 2019 in the European Parliament vate model of funding had yielded over EUR
on 26 February 2019, focusing on dementia 5 billion investment, with over EUR 300 mil-
as a European research priority. lion invested in brain disorders and over EUR
200 million invested in drug discovery to date.
Hosted by Anneli Jäätteenmäki MEP (Fin-
Dr Meulien identified a shift in approach Anneli Jäätteenmäki MEP (Finland) opens the lunch debate
land) (standing in for Sirpa Pietikäinen MEP),
“
the debate was attended by 64 delegates towards molecular mechanisms, acknowl-
from across Europe, including the Chair of edging that the previous focus on Dementia affects the daily
the European Working Group of People with disease-modification in the symptomatic
Dementia (EWGPWD), national Alzheimer’s stages of neurological conditions, including lives and routines of mil-
associations, research partners, pharmaceu- dementia, had not been effective. As such, the lions of people and their family
tical representatives and members of the overarching approach to neurodegenerative members, friends and carers.
European Parliament. conditions focused on four key areas: Under-
lying causes, populations at greatest risk, Research is the key to fighting
The Innovative Medicines Initiatives (IMI) improved clinical trial design and brain scan- dementia.”
ning as a means to improve detection and
The Executive Director of the Innovative treatment. Examples of IMI-funded research Anneli Jäätteenmäki MEP
Medicines Initiative (IMI), Pierre Meulien, projects underway included the “European
presented on the work of IMI through both Prevention of Alzheimer’s Disease” (EPAD)
its iterations, IMI1 (2008–2013) and IMI2 and “Amyloid Imaging to Prevent Alzheim- Outcomes” (BD4BO) was highlighted as an
er’s Disease” (AMYPAD) projects. example of such an approach, with the pro-
ject aiming to improve sustainability within
Dr Meulien explored the value of health data healthcare systems. “Real world Outcomes
projects as a means of improving healthcare across the Alzheimer’s Disease spectrum for
systems and delivering better outcomes for better care: Multi-modal data Access Plat-
patients, including through the use of emerg- form” (ROADMAP) project sat under this
ing smart technology. “Big Data for Better umbrella.
“
Research in Finland
The public-private part-
nership model is the ideal Mikka Hiltunen, Professor of Tissue and Cell
vehicle to drive technological Biology at the Institute of Biomedicine, Uni-
versity of Eastern Finland (UEF), presented
convergence enabling more on current research being carried out within
robust health systems and his institute concerning brain health in the
better practices in health pro- older population, with a specific focus on
biomarkers as a means of prevention and
motion, disease prevention and early detection for dementia. Prof. Hiltunen
management.” explained that understanding the genetics
of Alzheimer’s disease was one of the best
Pierre Meulien ways to improve knowledge on the condition.
Pierre Meulien presents on the IMI2 partnership
4 Dementia in Europe
ALZHEIMER EUROPE
“
It is paramount to
continue developing col-
laboration and platforms for
researchers in the field of neu-
rodegenerative diseases – thus,
Neurocenter Finland is coded to
connect researchers and other
stakeholders.”
Mikka Hiltunen
involvement in international research collab-
orations. The overview included reference to
the EU’s Joint Programme on Neurological
Stéphane Hogan highlights the contribution of the
Diseases (JPND), which involved the European European Commission to research
Mikka Hiltunen explains the work of the UEF DNA Bank for deciphering the missing herit-
ability of Alzheimer’s disease, which collated
Expanding on this, he described the work of ~40,000 patients and ~66,000 controls from European Commission funding for research
Neurocenter Finland, which works to inte- 13 countries.
grate neuroscience research into disease Stéphane Hogan, Head of Sector for Neuro-
prevention, diagnostics, treatment and reha- Finally, Prof. Hiltunen outlined a further science in the Directorate General Research
bilitation, as well as promoting collaboration example of Finnish collaboration with other and Innovation at the European Commission,
and research innovation. EU research programmes, through the work highlighting the EU’s support for dementia
of the “Genetics and Mechanisms in Trans- research in Europe. Mr Hogan, outlined that
He also provided an overview of the AlzTrans lational Medicine Doctoral Programme” the EU’s contribution across frontier research,
project was provided, which seeks to evalu- (GenomMed), which will train specialists in collaborative research and training and
ate the translational aspects, feasibility and translational genomics to solve health care-re- mobility had totalled EUR 664 million, with
applicability of novel Alzheimer disease-asso- lated questions in the fields of neurosciences, EUR 339 million going towards projects on,
ciated risk genes/variants, as well as Finland’s cardiovascular and metabolic diseases. or involving Alzheimer’s disease.
“
It is paramount to scruti-
nise the highly individual
cultural and political factors
influencing the lives of peo-
ple with dementia, taking into
consideration the similarities
and differences across but also
within Europe.”
Iva Holmerová
Iva Holmerová introduces Alzheimer Europe’s publications
Dementia in Europe 5
ALZHEIMER EUROPE
Mr Hogan provided an overview of the
approach of the European Commission across
six areas, including molecular pathogenesis,
epidemiology, prevention, diagnosis and
monitoring, treatment, and care and support.
He drew attention to a number of projects
across these areas, including the “Organising
Knowledge about Neurodegenerative Disease
Mechanisms for the Improvement of Drug
Development and Therapy” (AETIONOMY) and
“Prevention of Dementia using Mobile phone
Applications” (PRODEMOS) projects, as well
as partnerships such as JPND and IMI.
In addition to being a major funder of
research, Mr Hogan noted that the role of
the EU included providing a network of col-
laborative projects, as well as providing a
framework for efficient research coordina-
tion between EU countries. When concluding,
he outlined the approach of the forthcom- Răzvan Prisada asks about the next breakthrough for dementia
ing Horizon Europe programme, including
its novel aspects such as dedicated research of an extended piece of work undertaken Alzheimer Europe Executive Director, Jean
missions and a commitment to open science. with the support of partners across Europe, Georges, asked about future research mis-
exploring how dementia was experienced sions within the Horizon Europe project,
Alzheimer Europe publications launched by minority communities. The report high- noting the absence of a specific mission on
lights the need for specific considerations in dementia research. Iva Holmerová asked
AE Chairperson, Prof. Iva Holmerová, thanked relation to cultural differences in the under- about the potential for greater involvement
the speakers, MEPs and attendees for tak- standing, status and position of dementia, of Central and Eastern European countries in
ing part in the lunch debate and officially which increase the stigma associated with Horizon Europe research projects.
launched two reports by Alzheimer Europe. the condition.
The first, “The development of intercultural Helen Rochford-Brennan, Chairperson of
care and support for people with demen- The second report, the Dementia in Europe the European Working Group of People with
tia from minority groups”, was the result Yearbook 2018, provides a comparison of Dementia (EWGPWD), highlighted that as no
national dementia strategies across Europe, cure was likely in the immediate future, more
comparing the content and policy priorities support should be given for programmes
set out in each document. The report high- exploring psychological supports which
lights the strong focus on systems of care ensure that people with dementia are able
and support for people with dementia, whilst to live well with the condition.
also noting the frequency of other areas, such
as research, training for professionals and Andy Bolan from Biogen expressed support
awareness raising. for the work and connections made so far
through IMI and queried how the work from
Open floor discussion the projects was being communicated in
order to inform future partnerships, such
The session was concluded by an open floor as a potential IMI 3. Similarly, Gill Farrar of
discussion, with questions put to the speak- the European Federation of Pharmaceutical
ers on a range of themes, as well attendees Industries and Associations (EFPIA), asked
raising other points on other relevant issues. whether there was a specific piece of work
bringing together the findings and work from
Răzvan Prisada, the Romanian Health Attaché, current IMI projects.
attended the meeting, asking speakers about
the high failure rate in relation to drug devel- Alzheimer Europe’s next European Parliament
opment for dementia and about timescales lunch debate will not take place until Decem-
for the next significant breakthrough in ber 2019 owing to the European Parliament
Andy Bolan asks about a potential IMI3
dementia research. elections.
6 Dementia in Europe
ALZHEIMER EUROPE
Snapshots from Alzheimer Europe’s
European Parliament lunch debate
Helen Rochford-Brennan and Ana Diaz Attendees arrive for the lunch debate Alzheimer Europe’s reports were given to attendees
Heinz Becker MEP (Austria) Jean Georges asks a question on Horizon Europe’s “missions” Attendees listened to presentations on European dementia research
Former AE Chairperson Heike von Members catch up during the lunch debate Attendees had the opportunity to network
Lützau-Hohlbein
Attendees had the chance to talk with Carmel Geoghegan speaks with Pat McLoughlin Members discussed dementia research following the meeting
presenters
Dementia in Europe 7
ALZHEIMER EUROPE
Bringing together assessment
RADAR-AD will look at how to use technol-
ogy to capture reductions in the ability to
function independently during activities of
of functioning and technology daily living or when interacting with others.
in Alzheimer’s disease: how can Incorporating the views of people affected by
AD and their caregivers is vital to the success
people affected by AD contribute? of RADAR-AD. Their insights will ensure that
the ‘functional domains’ targeted for this
study are:
The RADAR-AD (Remote Assessment of Disease and Relapse
y Appropriate and clinically relevant to
in Alzheimer’s disease) project kicked-off in January 2019. The affected individuals and caregivers
partners give an overview of the project’s aims and discuss y Suitable for being recorded by digital
how it plans to involve people with dementia in its research. devices
y Sensitive to the early stages of AD
y Able to predict AD progression.
RADAR-AD is a collaborative research initia- challenging, stressful and even hazardous
tive that explores the potential of mobile and for a person with prodromal AD or mild AD Using technology in assessing and moni-
digital technologies to improve the assess- dementia. toring function in AD – some challenges in
ment of Alzheimer’s disease (AD). The AD selecting devices
terminology in the RADAR-AD project reflects As well as our ability to perform daily tasks,
the recent conceptualisation of AD as cover- the ability to function within the social envi- When assessing the level of difficulty and
ing the full spectrum of the disease, including ronment is important. This is particularly functional changes in daily living, researchers
both pre-dementia (preclinical and prodromal relevant because loneliness and social iso- usually rely on feedback from family caregivers.
AD) and dementia phases (mild to severe AD lation are more common and have negative This assessment may be influenced by subjec-
dementia). effects on health for older people and peo- tivity, inaccurate recall and, thus, it may not be
ple with dementia. Social interactions often reliable to estimate the level of impairment in
RADAR-AD builds on the knowledge and involve complex brain activity because both affected individuals. This lack of objective data
experience gained in a sister project called cognitive and emotional brain functions are could be mitigated following recent advances
RADAR-CNS (Remote Assessment of Dis- employed, such as conversing or understand- in digital technology, which is why RADAR-AD
ease and Relapse – Central Nervous System), ing non-verbal communication (e.g. body is seeking to use widely available, affordable
which was launched in 2016 and is explor- language and facial expressions). Measur- digital technology to try to improve current
ing remote monitoring in people living with ing daily functioning is therefore important measures of function in AD.
multiple sclerosis, epilepsy and depression. but has traditionally relied on questionnaires,
rather than monitoring someone in their For example, smartphones, currently owned
Why is ‘function’ relevant to AD? home or social setting. by 9 out of 10 people, may help assess social
When assessing the clinical symptoms of
prodromal AD and mild AD dementia, the
focus is typically on measures of cognition, The project partners
such as memory tests, executive function
and language. Although this can tell us The following organisations are involved in RADAR-AD:
how well someone’s brain is functioning
on the day of assessment, it neglects to
consider how AD impacts day-to-day living
for affected individuals and their caregivers.
There are certain tasks we need to do on a
daily basis, often on multiple occasions in
the same day, in order to function and meet
our needs, such as getting dressed or pre-
paring a meal. These repeated tasks vary in
complexity, from walking or tidying up, to
driving or managing finances. Such activi-
ties of daily living can become increasingly
8 Dementia in Europe
ALZHEIMER EUROPE
behaviour (e.g. via monitoring calls, SMS, or and other functional impairments, e.g. the In addition, information from 40 “healthy vol-
Internet browsing). With the additional use of need for a waterproof device, or for a sound unteers” (i.e. people with no AD) will be used
wearable wristwatches or wristband sensors, or blinking light to remind users to charge to provide a comparison with people with AD
it may also be possible to measure activity the device. An optimisation process could of the same age. The study will last around
level, stress level, heart rate, gait and other then seek to identify the best compromise eight weeks. During this time, each study
important information relating to daily func- between the most technologically advanced participant will be requested to use wear-
tioning for people with dementia. Leveraging devices and those most acceptable to users, able digital devices and answer questions
clinical and technological advancements to thus satisfying both parties. on smartphones. A subgroup of 50 people
better monitor day-to-day functioning in AD, with AD will also be monitored with digital
could lead to transformative management/ The RADAR-AD clinical study technology installed in their homes, so as to
treatment of this multifaceted and potentially profile behaviour at home.
disabling condition. To determine the potential and value of using
“
these devices to assess and monitor function The statistical analysis of results will provide
in AD, the RADAR-AD team will carry out an information about which digital measure-
Incorporating the views of observational clinical study. The study will ments most accurately predict the conversion
people affected by AD and provide support to seamless digital measure- to a different stage of AD and about how
their caregivers is vital to the ments that have been identified as potentially accurately they can detect the level of impair-
useful in assessing functioning in people ment in specific activities of daily living.
success of RADAR-AD.” with AD. This clinical study will enrol people
with a diagnosis of AD (based on a positive The study is planned to start in autumn 2019,
The number of different devices increases b-amyloid biomarker test). The study will look at 13 different clinical centres of excellence
every year, resulting in a multitude of factors at the effectiveness of wearable and home- located in 12 European countries, coordinated
or parameters that developers need to con- based digital sensors in detecting small by the academic VU University Medical Center
sider, such as data heterogeneity, changes in the performance of some activi- Amsterdam (VUMC) in Amsterdam and by the
manufacturer standards and programming ties of daily living. Pharma team of the Takeda Neuroscience
interfaces. End-users themselves also need Therapeutic Area Unit. Results are expected
to consider a range of factors such as shape, The outcomes RADAR-AD are expecting to in approximately three years.
materials, battery life, design, functionality, measure include social interaction, spatial
precision and range. navigation, outdoor mobility, driving and Patient involvement in the RADAR-AD
self-care. It is hoped this will provide more project
All these parameters should be taken into reliable information than questionnaires or
account when selecting appropriate devices diaries, which are currently used in clinical Involving people living with AD, as well as
for monitoring users, especially when it trials. 180 volunteers with a diagnosis of AD those supporting them, is an essential part
involves people with AD dementia. Feed- will be invited to take part in the study. They of the research trajectory in RADAR-AD. When
back from people with dementia, as well as will include: following the progression of AD in a clinical
their caregivers, introduces a most welcome setting, such as a doctor’s office, it is often
end-user perspective in the selection process, yy people with preclinical AD (amyloid posi- difficult to capture real-life contexts. People
highlighting parameters that might other- tive but no clinical symptoms), living with AD can provide unique insights
wise be overlooked by researchers. yy people with prodromal AD (some memory into daily life routines, how these may change
deficits but not dementia) and over time and what practical issues research-
Technology experts tend to select devices yy people with mild-to moderate AD demen- ers need to consider.
based solely on their desire to record the most tia (with clinical signs of dementia).
appropriate signals with the highest granular- People living with AD play an important role
“
ity and precision, failing to take into account, as true partners to the RADAR-AD research-
for example, that the chosen devices might ers. This is why a Patient Advisory Board (PAB)
be uncomfortable, heavy or too complicated Leveraging clinical and has been established, and will accompany the
for study participants, resulting in projects technological advance- project from inception to completion. The
which may be doomed to fail. ments to better monitor PAB includes members from across Europe
and advises on both conceptual questions as
The selection of devices should not be made day-to-day functioning in AD well as on practical issues, such as the trial
without the participation of patients them- could lead to transformative setup. The PAB is led by Alzheimer Europe
selves and, where appropriate, their caregivers. management/treatment of this and will mainly include members of its Euro-
They could draw attention to how particular pean Working Group of People with Dementia
features might be tailored to fit their expe- multifaceted and potentially dis- (EWGPWD) and their supporters. During the
riences of the disease, memory problems abling condition.” meeting of the EWGPWD in March 2019 in
Dementia in Europe 9
ALZHEIMER EUROPE
Luxembourg, members of the EWGPWD and
their supporters were invited to provide input
on various issues relevant to RADAR-AD. The
group provided feedback on the definition
and prioritisation of functional domains
in AD and main features to consider when
selecting a device for people with dementia.
They also reviewed and provided advice on
the protocol for the RADAR-AD clinical trial.
In addition to the PAB activities currently
underway, similar discussions on relevant
topics are being organised locally in the form Members of the European Working Group of People with Dementia and their supporters were invited to provide input on
of focus groups, which will be carried out in various aspects of RADAR-AD, at a meeting in Luxembourg, 19 and 20 March 2019
three different countries. This work is being
“
led by King’s College London and the groups
will involve people with prodromal AD, people People living with AD can provide unique insights into daily
with AD dementia and caregivers. Their input
will build on the contribution of the PAB and life routines, how these may change over time and what prac-
may raise some additional issues and differ- tical issues researchers need to consider.”
ences to consider.
Chris Roberts, member of the PAB and Vice-chair of the EWGPWD
Chris Roberts people with AD, are using mobile phones
participated inand other technology, so it is great that
the PAB meet- this project will use this mobile technol- The RADAR-AD project has received support
ing. He is fromogy to help record the progression of the from the Innovative Medicines Initiative
Wales and has disease rather than relying on sporadic Joint Undertaking under grant agreement
a diagnosis of tests and self-recording, which is often n° 806999 and will run from 2019 till 2022.
mixed dementia unreliable. An important strength of the www.radar-ad.org
(Alzheimer’s and vascular dementia) but project is that most of this data will be @RADARAD7
has not let this diagnosis get in the way collected remotely and continuously,
of leading a full life. He said: without interference in a person’s life. It is
amazing to see experts from many fields,
“As vice-chair of the EWGPWD, and also including medical research, engineering,
now member of the PAB, the RADAR-AD computer science, information technol-
project looks very exciting and new. It ogy etc., working alongside people with
aims to develop new ways of monitoring AD and carers, to improve the quality of
the progression and potential detection life of everyone affected by Alzheimer’s
of early Alzheimer’s disease using wear- disease. On a personal point, I am really
able devices and smartphone technology. pleased to see that people living with www.imi.europa.eu
Nowadays, most people, including many Alzheimer’s disease will be involved”.
10 Dementia in EuropeALZHEIMER EUROPE
Why IMI PARADIGM?
and organisations that have been doing this
work for so many years. Patient engage-
ment truly is a ‘win-win’ for all. Nobody
should be excluded or left behind because
Four stakeholders in the IMI PARADIGM project – Patients of their condition, disability, age or any other
Active in Research and Dialogues for an Improved Generation circumstances.
of Medicines – tell us why they are committed to this initiative,
PARADIGM is a great platform to imagine
what they hope will emerge from it, and why collaboration is key. and advocate for different and better ways
of engaging patients in research and medi-
cines development. Let’s make the most of it!
The IMI PARADIGM project is a public-private At Alzheimer Europe, we have been pioneers
partnership co-led by the European Patients’ in promoting the involvement of people with The industry perspective – Nathalie Moll,
Forum (EPF) and the European Federation of dementia in our own work and in research. A Director General, EFPIA
Pharmaceutical Industries and Associations key objective of our strategic plan is to pro-
(EFPIA). The objective is to develop processes vide a voice to people with dementia and At EFPIA, we work across
and tools for three key decision-making their carers, so that they can be full partners a wide spectrum of top-
points: research priority setting, design of in policy development, research and service ics from prevention and
clinical trials and early dialogue. PARADIGM design. In 2012, inspired by the work that had awareness, through
will integrate the needs, perspectives and been done in Scotland, we set up the Euro- research and develop-
expectations of all actors involved and pro- pean Working Group of People with Dementia ment (R&D), regulatory
duce a set of metrics to measure the impact (EWGPWD). Members of the EWGPWD and and Health Technology Assessment (HTA)
of patient engagement. their supporters have provided important processes, managing relationships, to
input to a number of prominent European developing healthcare service design and out-
The patient perspective – Jean Georges, projects, have contributed to published sci- comes measurement. Each one has a direct
Executive Director, Alzheimer Europe entific articles and are helping to bring the impact on the lives of patients, their families
voice of the experts by experience, “the lived and carers across Europe.
Dementia affects around experience”, to many discussions and debates
nine million people in around dementia research. Actively listening to patient experiences and
Europe. Despite much patient challenges, and exchanging insights,
effort, no treatment exists I am very proud of the work the EWGPWD car- must shape how we develop our policy, pro-
to date to cure, prevent or ries out and of the work they are now doing in cesses and practice. It is only through open
slow down its progression. PARADIGM. I see Alzheimer Europe’s involve- and transparent dialogue between patients,
Globally, and at European level, a lot of research ment in PARADIGM as a great opportunity to industry and other key stakeholders that we
is being conducted, which is helping to better continue growing in this area – to improve can ensure the patient perspective becomes an
understand what causes dementia, the risk the way we and our member associations integral part of how medicines are researched,
factors, its progression, how to cope and live around Europe involve people with dementia developed and delivered to patients.
better with the condition and to develop more and to be able to demonstrate, in a concrete
effective treatments and care options. way, the important impact that experts by This is why patient engagement is at the fore-
experience can make. front of EFPIA’s work and why I am very proud
“
Examples of people with dementia and that EFPIA is part of the ground-breaking IMI
their carers being meaningfully involved in PARADIGM programme. One of PARADIGM’s
research do exist, but several challenges still PARADIGM is a great plat- key strengths is its collaborative, inclusive
need to be addressed, for example, existing form to imagine and approach, bringing together a wide range
misconceptions and stigma around demen- advocate for different and bet- of stakeholders, including industry, the aca-
tia. People living with the condition should demic community, regulators and, most
feel empowered, enabled and supported and ter ways of engaging patients in crucially, patients. PARADIGM has a spe-
should be afforded the opportunity to take research and medicines develop- cific focus on making patient engagement
part in and contribute towards research, if ment. Let’s make the most of it!” happen across three main moments of med-
they so wish. They can play an important icines development, where patient input is
role as research participants and contribute Jean Georges not yet systematically sought. We are shar-
their opinions about the type of research ing our knowledge and experience to develop
that they would like to see prioritised, how new tools and processes and a sustainabil-
this research should be undertaken or how I particularly appreciate the opportunity to ity roadmap and we hope to make a strong
the findings should be disseminated to the work together and to learn from the expe- case for patient engagement by capturing
dementia community and to the wider public. rience of other patient groups, companies and measuring the tangible benefits it brings.
Dementia in Europe 11ALZHEIMER EUROPE
“
PARADIGM’s ambition goes beyond providing PARADIGM’s ambition goes Many research funders increasingly require evi-
practical tools and a measurement frame- beyond providing practical dence of PPI/PE in research. There is a growing
work. This project is set out to bring real PPI ’industry’ to support this: many academic
cultural change across the board, making col- tools and a measurement frame- institutions undertaking health research have
laboration an integral part of the European work. This project is set out to designated PPI leads, strategies and plans
research culture, challenging the status quo bring real cultural change across in place, and much is said (and developed)
and providing a safe space to discuss how to about the need to ensure that best practice
do things differently. the board.” is followed. In addition, academic-industry
partnerships are an increasing mainstay of the
Cultural and practical change both take time Nathalie Moll successful interface in the translation from
and EFPIA and its PARADIGM partners are ’bench to bedside’ and embedded in the over-
committed to making change happen to suitable for them. With this aim, the Euro- arching strategies of academic institutions.
deliver better care for patients. pean Young Person’s Advisory Groups Mechanisms to effectively integrate PPI into
Network (eYPAGnet) was established in these partnerships are already being put in
The research foundation perspective – 2017 to provide a single point of contact in place, but more is needed.
Begonya Nafria, Patient Engagement in Europe to facilitate activities of patient and
Research Coordinator, Fundació Sant Joan public involvement (PPI) in drug develop- Despite all of this, the opportunities for aca-
de Déu ment, to answer the requests of the different demic groups to collaborate and co-create
stakeholders involved in the performance of research with more than one other stake-
Disease in minors can be clinical trials. Fundació Sant Joan de Déu is holder group at a time are relatively rare, and
considered as antinat- one of the founder members of eYPAGnet, often restricted to the local or regional levels.
“
ura. A child is expected and has a policy of including patients in all
to be born and grow up the research initiatives in which it is partic- PARADIGM is a unique
healthy; nevertheless ipating – from the evaluation of the call for
there are a huge num- projects, to the dissemination and commu-
opportunity to standardise
ber of conditions that have their onset in nication of outcomes. the involvement of vulnerable
the early ages and only affect minors. This is populations in drug develop-
especially so in the case of rare diseases. From PARADIGM is a unique opportunity to stand-
the 8,000 conditions that can be considered ardise the involvement of vulnerable
ment and also to design metrics
rare, around 80% of them affect minors. populations in drug development and also to measure its impact.”
to design metrics to measure its impact. I
On the other hand, there are limited treat- envision a new landscape in future paediatric Begonya Nafria
ments available for paediatric patients clinical trials, where patients will be stake-
and also an emerging need for medicines holders throughout the process. They will IMI PARADIGM offers unprecedented access to
designed for children. 50% of treatments have a voice and contribute opinions to facil- the expertise, experiences and perspectives of
prescribed for paediatric patients have never itate the development of projects according all of the major stakeholder groups involved
been tested in this age group and when it to their own needs. Thanks to the support of in biomedical development and healthcare.
comes to neonates this figure increases to IMI, there is momentum for change to hap- This extends far beyond local levels and cov-
around 90%. pen, to improve the landscape of medicines ers national, European and international
for children. Let’s do it together! territories. The platform of a public-private
The Paediatric Regulation that came into partnership opens up not only transparent dia-
force in the EU on 26 January 2007, aimed The academic perspective – Dr Stuart logues between those stakeholders to answer
to improve the health of children in Europe Faulkner, Programme and Operations man- the questions at hand, but can also break
by facilitating the development and availa- ager, Nuffield Department of Primary Health down long-seated barriers, misconceptions
bility of medicines for children aged 0 to 17 Sciences, Oxford University and myths of other stakeholder groups. The
years. Despite the regulation, however, more discourse is no longer split along the lines of
patient-centred research is required, in order Patient engagement (PE) ‘us’ and ‘them’. Problems are solved together as
to design better medicines for children. and patient and public equal partners, working across pillars and help-
involvement (PPI) can ing to avoid silos and blinkered approaches to
Generally, minors have been considered help develop research problems, often a criticism of some academic
vulnerable populations and, historically, questions, methods and communities. Ideas and solutions are chal-
have not been included in research pro- outcomes that respond lenged at a level not possible with standard
jects. New approaches emphasise the need better to the needs and interests of patients research approaches, and the solutions that
to conduct research for paediatric patients, and carers. Researchers can benefit by pro- are co-developed account for those differing
including them in the early stages of drug ducing research that is more relevant and options and needs of each stakeholder group
development to ensure clinical trials are impactful. much more readily.
12 Dementia in EuropeALZHEIMER EUROPE
Ultimately, the applicability, feasibility and stakeholders, which strengthens future
impact of our combined work under PARA- collaborative potential, new research fund-
DIGM is of much greater value to patients, the ing potential, and new mechanisms for
research community, and the broader stake- knowledge brokerage. The partnerships and
holder communities involved. Complementing friendships already created here should last
this, is the increased level of public dissemina- long into the future.
tion of our collective outputs – a much more PARADIGM is receiving funding from
readily digestible and accessible combina- “We are Paradigm” – a campaign the Innovative Medicines Initiative Joint
Undertaking 2. This Joint Undertaking
tion of openly available material – on a public receives support from the European
platform containing multimedia outputs com- The four stakeholder commentaries in this Union’s Horizon 2020 research and
bined with traditional peer-reviewed scientific article are based on blog entries from a recent innovation programme and EFPIA.
articles. The risk that research is understood by (April-May 2019) awareness and profile-raising
www.imi-paradigm.eu
only a select few is greatly reduced. social media campaign by the IMI PARADIGM
@imi_paradigm
project, #WeAreParadigm.
Finally, the PARADIGM consortium sets the
basis for growing strong and sustained You can find the full blog texts on the project
relations with new partners and new website: www.imi-paradigm.eu/blog
“
The platform of a public-private partnership opens up not
only transparent dialogues between those stakeholders to
answer the questions at hand, but can also break down long seated
barriers, misconceptions and myths of other stakeholder groups.
AT A GLANCE
The discourse is no longer split along the lines of ‘us’ and ‘them’.”
Stuart Faulkner
Geographic representation AT A
Geographic represent
1 | Denmark
14 | Belgium
2 | Canada 4 | Netherlands 1|D
14 | Belgium
5 | Germany
2 | Canada
9 | UK
9 | UK
3 | Switzerland
5 | France
5 | France
1 | Luxembourg
1 | Luxembourg 4 | US
5 | Spain
4 | US 1 | Austria
5 | Spain
1 | Greece
Consortium
in numbers
Dementia in Europe 13
ConsortiumALZHEIMER EUROPE
AETIONOMY – towards a taxonomy
diseases, focusing on Alzheimer’s and Par-
kinson’s diseases. During the project, the
team aimed to address the classification of
for neurodegenerative diseases disease by dissecting the underlying mech-
anistic/molecular causes of disease, and by
linking these to clinical evidence.
The AETIONOMY project recently came to an end after five years.
Dr Phil Scordis, Industry Coordinator for the project, explains This ambitious goal was far beyond the scope
of any single company, university or institu-
its background and highlights some of its aims, as well as tion. The key to the success of AETIONOMY
its outcomes. He also speaks to Academic co-lead Martin was the broad nature of the project consor-
Hofmann-Apitius about the project’s deliveries, approach tium and the intense collaboration between
project partners. Driven by a diverse group of
and impact. scientists – the consortium comprised: clini-
cians with expertise in treating patients with
neurodegenerative disorders; research scien-
Despite many advances in modern medi- Innovations in certain fields of medicine, tists from several companies; and a group
cine, today disease still tends to be defined such as the treatment of oncology, have of data scientists – the project developed
based on the presentation of external signs demonstrated that new models for disease innovative computational tools to manage
and symptoms – a practice barely changed classification are needed and, importantly, and interpret the complex healthcare and
since the 19th century. Consequently, while can be effective. These definitions, rather research data environment.
two patients may share the same diagnosis, than being built on symptomatology, must
the underlying causes of their symptoms be derived from the pathogenic mechanisms AETIONOMY’s legacies
may be very different. Unfortunately, the that drive the disease – the underlying molec-
result of this is that treatments that work ular drivers. After 5 years of work, across a range of tasks,
for one individual may prove ineffective in the legacies of the project are now clear.
another. Equally, while the development An innovative and ambitious approach
of an understanding of symptoms may be Central to the project was the donation of sam-
becoming more effective at directing phy- The AETIONOMY project, started five years ples from patients and control participants
sicians towards correct classification of ago (2014) as part of the Innovative Medicines who generously participated in the clinical
disease, the lack of understanding of the Initiative (IMI) Taxonomy call, has striven to study, and the generation of new molecular
drivers of disease keep us from developing pave the way towards an innovative approach insights from these samples. In addition, the
effective treatments. to the classification of neurodegenerative result of significant effort to make available,
to clean, associate and relate historical data
AETIONOMY operations team (left to right) Phil Scordis, Martin Hofmann-Apitius, Jacqueline Marovac and that had been collated in various resources.
Stephan Springstubbe The combined central knowledge base is now
hosted in an environment that will support
future researchers for many years to come:
https://data.aetionomy.scai.fraunhofer.de/
These data have helped us verify compu-
tational predictions and explore a range
of molecular theories underlying disease
progression.
Ultimately, the project identified relation-
ships between molecular drivers and a
sub-grouping of patients that was evident
in multiple independent datasets; as well as
a grouping of features that might help pre-
dict the risk of rapid neurodegeneration in
another sub-group of patients. These pro-
totypical subgroupings represent hints at a
mechanism-based taxonomy for neurode-
generation and a view of driver mechanisms
underlying these disorders. We hope that this
14 Dementia in EuropeALZHEIMER EUROPE
will play a key role in drug discovery and project from the earliest evolution of the pro-
development in both syndromes. ject definition. This concept of making data
resources capable of supporting more than
While these deliverables are certainly not just the research projects for which they were
treatment options for patients today, we conceived has gained significant recognition
believe they represent foundational build- in the last few years (www.go-fair.org). This
ing blocks that will support the community is important to highlight because it is these
to move towards these goals. Indeed, only a data resources and their reuse which offers
few months after the end of the project in great possibilities to future researchers.
December 2018, the ongoing research across
the original consortium members and new MH-A: [Yes] the successful demonstration of
collaborative projects that have already the unique approach to collect ALL data and
started to extend the findings of the project, ALL knowledge in a given indication area and
give us great hope for the future. to curate them, to re-annotate them and to
aggregate them in a way that they can be
used for modelling and mining. AETIONOMY Prof. Martin Hofmann-Apitius
has shown that this can be done in a diffi-
cult indication area (“neurodegeneration”). I
believe we will see much more of such holis- data and knowledge is now being much more
tic approaches in the near future. appreciated by the pharmaceutical industry.
PS: On top of this effort to construct a com- PS: Indeed, the concepts that we explored
prehensive historical knowledge base, we in the beginning of the project may have
have benefited greatly from the generosity been unusual in the NDD field but there is
of patients and volunteers donating samples a groundswell acceptance in the biomedi-
and consenting to the use of these for the cal community of the value of building the
benefit of future research. With the clinical kind of integrated knowledge bases and the
team, we have generated a comprehensive value of modelling and simulation to help us
marriage between clinical observations and bring more and more clarity to the challenges
known molecular features in order to unravel of medical research and disease treatment
Phil Scordis disease aetiology. Now, I appreciate that it is development.
early in the comprehensive analyses of these
Dr Phil Scordis, Industry Coordinator speaks data, which we expect to fuel research ini-
to Martin Hofmann-Apitius, Academic tiatives for years to come, but can you say
Co-lead about the project’s key deliveries, something about the exciting insights that
its unique approach and its legacies may be emerging?
PS: How would you describe the key deliver- MH-A: The finding that a mechanism that has
ies of the AETIONOMY project? been predicted in silico [(computationally)] and The research leading to these results has
links pathophysiology mechanisms involved received support from the Innovative
MH-A: The approach of systematically cap- in Alzheimer’s disease to pathophysiology Medicines Initiative Joint Undertaking
turing and representing knowledge on mechanisms underlying Parkinson’s disease under grant agreement n°115568, resources
neurodegenerative diseases in a computa- and that has a strong “stress sensor” compo- of which are composed of financial
contribution from the European Union’s
ble form (as a graph model that represents nent, has shown to be the strongest candidate Seventh Framework Programme (FP7/2007–
causes and effects and that can be analysed for a subgroup-defining mechanism in Parkin- 2013) and EFPIA companies’ in-kind
using algorithms that work on knowledge) and son’s disease. We have not yet independently contribution.
[generation of] the world’s largest inventory of validated this pattern but it shows up in two
www.aetionomy.eu
multiscale (ranging from the molecular level to independent Parkinson’s cohorts.
the clinical level and cognitive readouts) and
multimodal disease mechanisms for Alzheim- PS: What do you think this means for the
er’s and Parkinson’s disease represented in the future of research in Neurodegenerative
“cause and effect” modelling language Open- Disorders?
BEL (www.openbel.org).
MH-A: AETIONOMY was all about a systematic
PS: The importance of a computationally approach towards an entire indication area
tractable resource has been central to the and this systematic ordering and analysis of
Dementia in Europe 15ALZHEIMER EUROPE
Showing the support of candidates
Looking back at Alzheimer Alzheimer Europe wrote to all 751 existing
Europe’s #DementiaPledge2019 Members of the European Parliament (MEPs),
asking them to sign up to the election pledge.
campaign Additionally, we contacted all members of
the EAA asking them to pledge their support.
In the run up to the European Parliament elections, Alzheimer For the first time, Alzheimer Europe allowed
Europe worked with its members to run a campaign, asking candidates to declare their support for the
pledge in a number of ways, not solely by
candidates in the election to sign up to its pledge to make completing and returning the pledge form.
dementia a European priority. Candidates were able to indicate their
support through social media (primarily
through Facebook or Twitter) by including
In this article, we look back at the activ- The #DementiaPledge2019 the #DementiaPledge2019 hashtag, as well as
ity over the course of the past few months, by directly replying to the emails sent them.
leading up to the European Parliament elec- Alzheimer Europe launched its campaign for
tions, including the pledge itself, social the European Parliament election 2019, at itsAll responses and candidates’ messages of
media activity in relation to the pledge and Public Affairs meeting in on 27 February 2019,
support were recorded on a spreadsheet,
how our members helped us build a suc- asking our members to join us in asking can- including noting the national and European
cessful campaign. didates standing for election to commit to party affiliation, where support had been indi-
making dementia a European priority. cated, and (for existing MEPs) their EAA status.
A separate article on page 21 provides a Doing so allowed us to gauge progress on
post-election analysis of the European Elec- As with the 2014 election, Alzheimer Europe the campaign, identifying the distribution of
tions, including the number of candidates produced a “Dementia Pledge”, asking can- support across countries, as well as making
who signed the pledge and the numbers of didates to work with us, if elected to the it easier to identify supporters post-election.
members within the European Alzheimer’s European Parliament, to make dementia a
Alliance (EAA), as well as a brief timeline of European priority by joining the EAA, prior- To increase visibility for the campaign,
the next steps in the political process, and itising dementia in a number of policy areas Alzheimer Europe thanked all candidates for
what this means for Alzheimer Europe’s pol- and participating in dementia friendly initi- their support for the pledge on Twitter, whilst
icy activities. atives in their countries. also uploading the names of signatories onto
our website.
In order to increase the likelihood of can-
didates signing the pledge, we wanted to Involving the European Working Group of
ensure that it was available in as many lan- People with Dementia
guages as possible. Through the support of
our members, the pledge was available in 15 Alzheimer Europe was delighted to be able
different languages: to involve the European Working Group of
People with Dementia (EWGPWD) as a part
yy Bulgarian of the campaign, ensuring their voices were
yy Croatian heard by candidates.
yy Czech
yy English Members of the group were asked about their
yy Finnish views on why MEPs should sign up to the
yy French pledge and the issues they wanted to see
yy German MEPs focus on should they be elected. Five
yy Greek members of the group contributed messages:
yy Hungarian
yy Italian yy Helen Rochford-Brennan (Ireland)
yy Luxembourgish yy Idalina Aguiar (Portugal)
yy Polish yy Petri Lampinen (Finland)
yy Slovenian yy Stefan Eriksson (Sweden)
yy Spanish yy Chris Roberts (UK - Wales).
yy Swedish.
Finland’s translated #DementiaPledge2019
16 Dementia in EuropeYou can also read
