1. INTERNATIONAL SYMPOSIUM ON FUNDED BY PATIENTS' ORGANISATIONS
IBD RESEARCH
FUNDED BY PATIENTS' ORGANISATIONS
“ROADMAP”
Brussels 18 October 2012
Hotel Métropole
EVENT ORGANIZED BY EFCCA

2. afa, its story INTRODUCTION
1982 … Janine Aupetit with Pr Le Quintrec creates afa after the death of her son François Aupetit, who had Crohn’s disease
There was no network of gastroenterologists, no team of research specialized in IBDs, clinicians (and patients ! )were isolated
While The Pr Le Quintrec tried to constitute a network, Janine Aupetit looked for money from her friends
So at the origins of afa, there was at the same time the research funding and the necessity to encourage collaboration around IBDs
Janine Aupetit
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

3. Creation of the first Scientific Committee in 1982
Research : How ?
Creation of the first Scientific Committee in 1982
Composed of clinicians as well as researchers
Realisation of a call for projects launched every year to all french research institutes
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

4. Projects that lead to stable research teams (sustainability)
SELECTION CRITERIA
Help to start projects likely to continue with other funding ( win time )
Projects that lead to stable research teams (sustainability)
Projects that promote multidisciplinary collaboration
Exploring various lines of research, inflammation, immunology, epidemiology, bacteriology, psychology
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

5. DESCRIPTION OF RESEARCH
Since 1982, afa has supported 180 research grants for nearly 5 million € in the knowledge of IBDs.
There are 4 leads of research for which we are proud to have raised money
1/ The first french epidemiological studies (EPIMAD) 2/ Discover and locate on chromosome 16 of a gene of susceptibility of Crohn's disease (1st in the World) – Jean Pierre Hugot- Gilles Thomas 3/Highlight the possible role of intestinal bacteria – Arlette Darfeuille-Michaud 4/Support the investigation CESAME with patients- Laurent Beaugerie
In 2009 : € allocated to research
In 2010 : afa doubled its budget by launching a large call for projets for €
on the pathophysiology of ulcerative colitis.
In 2011 : € were awarded to 12 grants
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

6. What is important for us
Funding sources are only private : members + private donations (grants in memory of Fabrice Glikson: euros for UC)
Research is directly linked to patients choices
afa does not want to be just a wallet = we want to go further in the involvment.
Research funding is not the only source of an association’s involvement in research Ex : The best successes often come from the clinic : patients can participate in the development of leads of research (survey ) The key to success lies in an agreement between clinicians and basic researchers. So, why not with patients ?
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

7. Strong Examples for us Two research units totally dedicated to IBDs
One in Paris INSERM U773 / Labex Inflamex managed by Eric Ogier Denis ,
the other in Lille INSERM U995 managed by Pierre Desreumaux
And specific research about UC
In Paris , Tobacco , appendicectomy and UC : What in tobbaco and appendicectomy improves UC ?
In Lille, cholangitis and UC : why when cholangitis wakes up, the UC becomes quiet ?
Fascinating questions that come from clinical observation…good results are waiting.
A very close relationship with clinicians and basic researchers. And the possibility for the patients to visit the units and meet the researchers (organised by afa).
A way to make feel the researchers useful and the patients hopeful
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

8. Tomorrow
Develop a special call for projects about social and human sciences :
To help patients to better deal with the impacts of their disease and to restore their role in society, inside the family, at work (Therapeutic Education)
To evaluate the impact of a patient’s organisation in the society
To evaluate the impact of the invisible disability etc…
Questions : How to evaluate and judge the projects ? Do we need experts ?
Intensify the link between patients and researchers to go further : surveys to know the real life, visits with patients in research laboratories, create mixed groups to discuss.
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP