RD-Connect guidelines for informed consent receive the “IRDiRC Recognized Resources” label
The RD-Connect Guidelines for the informed consent process in international collaborative rare disease research have recently received the label IRDiRC Recognized Resources. The label highlights the initiatives that the International Rare Diseases Research Consortium (IRDiRC) identifies as of fundamental importance to the international rare diseases research and development community.
The Guidelines propose solutions to some of the challenges faced by international rare disease research, which involve the sharing of clinical and genomics data between research centres worldwide. They propose a list of core elements that an informed consent template for international collaborative rare disease research should contain.