Task Force Opening: Clinical Research Networks for Rare Diseases

The Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Clinical Research Networks for Rare Diseases aiming to map and analyse the existing ecosystem of national/supranational clinical research networks, and develop policy recommendations on guiding principles for an international framework of collaboration of these networks.

The ISC is looking for members to populate this Task Force with the below expertise in one or more of the following areas:

  • Clinical research network coordination
  • CRN clinical/research practice
  • Clinical data sharing and reuse for research
  • Establishment of good clinical practices
  • International rare disease policy and regulatory issues
  • Patient advocates
  • Research funders

The usual time commitment includes quarterly 1-hour teleconferences, one face-to-face workshop (1-2 days), and regular email correspondence.

If you are interested in taking part in this activity, please send a CV, biosketch and letter of motivation (one paragraph each) to the Scientific Secretariat before May 20, 2019.

Importantly, do not forget to add in the subject of your email the reference of the project (Ref: TF-ISC-CRN).

Only selected candidates will be contacted. Other applications will be kept for potential future use.

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