The International Rare Diseases Research Consortium: Policies and Guidelines to maximize impact

Hanns Lochmüller, Josep Torrent i Farnell, Yann Le Cam, Anneliene H Jonker, Lilian PL Lau, Gareth Baynam, Petra Kaufmann, Hugh JS Dawkins, Paul Lasko, Christopher P Austin, Kym M Boycott & on behalf of the IRDiRC Consortium Assembly; European Journal of Human Genetics 25, 1293–1302 (2017) doi:10.1038/s41431-017-0008-z

The IRDiRC Policies and Guidelines are the first, detailed agreement of major public and private funding organizations worldwide to govern rare disease research, and may serve as a template for other areas of international research collaboration. While it is too early to assess their full impact on research productivity and patient benefit, the IRDiRC Policies and Guidelines have already contributed significantly to improving transparency and collaboration in rare disease research.