Rare Diseases Clinical Research Network (RDCRN)

Published by NCATS

NCATSRDCRNClinical DevelopmentNetwork

The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

View this resource Bookmark this resource

Japan Agency for Medical Research and Development (AMED) leads the Initiative on Rare and Undiagnosed Diseases (IRUD) program. The program provides patients across Japan suffering from undiagnosed diseases with a diagnostic strategy that involves genetic analysis

View this resource Bookmark this resource

Procedural document: data collection and registration of clinical trials

Published by Orphanet

Patient EngagementClinical TrialOrphanet

Orphanet offers, amongst a range of expert resources on rare diseases, a directory of national and multinational clinical trials aiming to help: – clinical investigators working in the field of rare diseases find each other, establish collaborations, recruit patients; – patients and general public retrieve information on ongoing clinical trials for a particular disease, and stay informed on clinical trials that are recruiting; – experts, funding agencies and pharmaceutical industry obtain visibility on therapeutic development in the field of rare disease.

View this resource Bookmark this resource

Rare Diseases Registry Program (RaDaR)

Published by NCATS

Patient Registry

RaDaR, formerly known as the Global Rare Diseases Registry Data Repository program, aims to define best practices for patient registries. RaDaR also strives to identify and adopt standards to support high-quality registries for rare diseases therapeutics development.

View this resource Bookmark this resource