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Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB)

✍ Scribed by Yaffa R. Rubinstein; Stephen C. Groft; Ronald Bartek; Kyle Brown; Ronald A. Christensen; Elaine Collier; Amy Farber; Jennifer Farmer; John H. Ferguson; Christopher B. Forrest; Nicole C. Lockhart; Kate R. McCurdy; Helen Moore; Geraldine B. Pollen; Rachel Richesson; Vanessa Rangel Miller; Sara Hull; Jim Vaught

Book ID
116350907
Publisher
Elsevier Science
Year
2010
Tongue
English
Weight
227 KB
Volume
31
Category
Article
ISSN
1551-7144

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The Patient Registry Item Specifications and Metadata (PRISM) library was developed with funds from the American Recovery and Reinvestment Act (ARRA) with the primary purpose of supporting the use of standardized questions in rare disease patient registries. A patient registry is for a method of col