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31 May 2012

The Scientific council: researchers to advise us

Since 1981, even before the first Telethon, AFM-Téléthon set up a Scientific Council consisting of independent experts, to direct its policy for research into rare diseases. In 2016, Dr Odile Boespflug-Tanguy, Inserm researcher, chaired the 8th Scientific Council, composed of 92 international experts in neuromuscular dystrophy, rare diseases and biotherapies.

What is the Scientific Council's role?

It is a consultative body. It advises AFM-Téléthon in its research policy, suggests directions, evaluates the quality of the projects submitted and their results. In a nutshell, the decisions are made by the AFM-Téléthon board of directors. In 99% of cases, however, the scientific board follows the advice of the Scientific Council.
Composition of the 8th Scientific Council

How are the projects evaluated?

The Scientific Council is organised into thematic commissions (gene therapy, muscle science...). The projects submitted to AFM-Téléthon during calls for proposals are selected by the commissions concerned according to their scientific quality and relevance with respect to our strategy. We also submit them to external experts: for this, we are in contact with about 5,000 experts throughout the world. For strategic projects such as human drug trials, which last several years and involve heavier investments, we have created a new body within the scientific council: the strategic and therapeutic orientation committees (Coset – Comités d’Orientation Strartégique et Thérarpeutique). Each strategic project is monitored by a specific Coset which supports and advises it. Moreover, all the projects are subject to a final report.

Are the AFM-Téléthon research centres – Généthon, Institute of Myology, Atlantic Gene Therapies and I-Stem - also evaluated?

They have their own Scientific Committee, but every two years, they are audited by a global evaluation committee made up of members of the AFM-Téléthon Scientific Council and external experts.

What guarantees the quality and independence of the Scientific Committee evaluations?

Its members are volunteers and are acknowledged experts in their field: researchers from public laboratories such as INSERM (French National Institute for Health and Medical Research) or CNRS (French National Centre for Scientific Research) for basic research, biotechnology companies or pharmaceutical laboratories for drug development, etc. To retain a certain independence, 40% of them are foreign nationals. Furthermore, to avoid conflicts of interest, the projects submitted to external experts are anonymous. Finally, everything is traced. Scientific council meetings, for example, are recorded and written down.