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Patients & Clinical Research

Objectives of the group

The Group has set itself the goal of encouraging the involvement of patients and their associations in clinical research programs.

Operation

It meets approximately every 3 months to review its various actions. The actions are carried out by sub-groups and therefore discussed in quarterly plenary meetings led by Alain BALEYDIER.

Actions

  • Constitution of the directory of Patient Associations that have agreed to collaborate with the members of AFCROs (36 associations). Finalize its online release;
  • Development of a questionnaire « Feedback on the contribution of associations to research involving the human person (RIPH) ». The use of this questionnaire must now be promoted among associations, CROs, industrialists and authorities;
  • Writing of an article « Patient Participation in Clinical Research: for early, sustainable and transparent participation ». (3 pages; being finalized). It will then be necessary to disseminate the article to patients, industrialists and authorities;
  • Training of patients’ associations in clinical research using the half-day module developed by the group in coordination with France Assos Santé;
  • Organization of breakfasts on themes related to the group’s objective.

Group Members

A working group initiated by AFCROs in 2016, it is currently made up of 22 members including representatives of patient associations, industrialists, a member of CPP and members of AFCROs.

It is moderated by Alain BALEYDIER – member of the CODIR of AFCROs

The associations:  : 

Jean Marc Charrel – France Rein
Laura Phirmis – Fédération des Diabétiques
Marie-Laure Sorbier – AFPRAL
Raphaël Darbon – France Vascularités
Carole André – AFM-Téléthon
Hervé Nabarette – AFM-Téléthon
Annie Archer – Groupe AMyasthénie de l’AFM-Téléthon
Marianne Rdivière – LUPUS PLUS
Danielle Vacher – ANDAR
Marielle Lelait – Genethon
Irène Pico – AFPric

Committee for the Protection of Individuals :

Marie-Amélie Eudeline – CPP Sud Est 4

Industrialists : 

Sandrine Orabi – SANOFI PASTEUR
Marwan Sleiman – Actelion Pharmaceuticals France
Renaud Mougenot – Air Liquide
Juliette Longin – Merck

The members of AFCROs : 

Alain Baleydier – RCTs – Host
Hervé Servy – SANOIA
Christina Schiano – Optimarc
Lise Radoszycki – Carenity
Christian Legrand – URÆUS
Jean-Christophe Didier – Medpace

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