Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how many registries exist in the U.S. In Europe, however, the online portal Orphanet has counted a total 0f 812 regional, national, European, and international registries. The…

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