Yaffa R Rubinstein
Affiliation: National Institutes of Health
- Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB)Yaffa R Rubinstein
Office of Rare Diseases Research National Institutes of Health, Bethesda, MD 20892, United States
Contemp Clin Trials 31:394-404. 2010..Hurdles associated with biospecimen collection and how to overcome them were detailed. The development of the recommendations was, in itself, an indication of the commitment of the rare disease community as never before...