Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force.

ABSTRACT:

Background

Many patients with rare diseases are still lacking a timely diagnosis and approved therapies for their condition despite the tremendous efforts of the research community, biopharmaceutical, medical device industries, and patient support groups. The development of clinical research networks for rare diseases offers a tremendous opportunity for patients and multi-disciplinary teams to collaborate, share expertise, gain better understanding on specific rare diseases, and accelerate clinical research and innovation. Clinical Research Networks have been developed at a national or continental level, but global collaborative efforts to connect them are still lacking. The International Rare Diseases Research Consortium set a Task Force on Clinical Research Networks for Rare Dise

SUBMITTER: Nabbout R 

PROVIDER: S-EPMC10169162 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature