Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Workshop

Publications

The materials from the Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data Workshop are being finalized and will be available soon. If you attended or were on the waiting list for the workshop, you will be notified when the materials are available. If you were not an attendee or were on the waiting list, please check back for the workshop materials.

Below you will find four recent articles about the Global Rare Disease Registry (GRDR):

Patient registry for the overlooked patient/ The journals editor. Contemporary Clinical Trials. 2010 Sept;31 (5):393.
Letter to the editor/Yaffa R. Rubinstein and Stephen C. Groft
Contemporary Clinical Trials. 2010 Sep:3 (5):393
Creating a Global Rare Disease (Patient) Registry Linked to a Rare Diseases Biorepository Database: Rare Disease-HUB (RD-HUB),/Rubinstein et al. Contemporary Clinical Trials. 2010 Sep;31 (5):394-404.
The case for a global rare diseases registry. Forrest CB, Bartek RJ, Rubinstein Y, Groft SC. Lancet 2010 Aug. 2 193: 5-7
http://www.lancet.com/journals/lancet/article/PIIS0140-6736(10)60680-0/fulltext