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

Contemporary Clinical Trials

Volumn 31, Issue 5, 2010, Pages 394-404

  Rubinstein, Yaffa R ^a   Groft, Stephen C ^a   Bartek, Ronald ^b   Brown, Kyle ^c   Christensen, Ronald A ^d   Collier, Elaine ^e   Farber, Amy ^f   Farmer, Jennifer ^b   Ferguson, John H ^a   Forrest, Christopher B ^g,h   Lockhart, Nicole C ⁱ   McCurdy, Kate R ^j   Moore, Helen ⁱ   Pollen, Geraldine B ^a   Richesson, Rachel ^k   Miller, Vanessa Rangel ^l   Hull, Sara ^m   Vaught, Jim ⁱ  

^a NATIONAL INSTITUTES OF HEALTH   (United States)

^b Friedreich's Ataxia Research Alliance (FARA)   (United States)

^c Innolyst Inc   (United States)

^d REGISTRAT MAPI   (United States)

^e NATIONAL INSTITUTES OF HEALTH   (United States)

^f LAM Treatment Alliance   (United States)

^g CHILDREN S HOSPITAL OF PHILADELPHIA   (United States)

^h UNIVERSITY OF PENNSYLVANIA   (United States)

ⁱ NATIONAL CANCER INSTITUTE   (United States)

^j Barth Syndrome Foundation Inc   (United States)

^k UNIVERSITY OF SOUTH FLORIDA   (United States)

^l EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

^m NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

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Author keywords

Biospecimen; Biospecimen repositories; Clinical data; Disease registry; Electronic health record; Patient advocacy; Patient registry; Rare disease; Rare diseases

Indexed keywords

CLINICAL DATA REPOSITORY; CLINICAL RESEARCH; DISEASE REGISTRY; MEDICAL PRACTICE; NOTE; PATIENT ADVOCACY; PATIENT CARE; PATIENT PARTICIPATION; PATIENT RIGHT; RARE DISEASE;

DATA COLLECTION; DATABASES, FACTUAL; DISEASE MANAGEMENT; DRUG INDUSTRY; EDUCATION; ETHICS, MEDICAL; HUMANS; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; NATIONAL INSTITUTES OF HEALTH (U.S.); PATIENT ADVOCACY; PATIENT CARE; PATIENT PARTICIPATION; RARE DISEASES; REGISTRIES; SOCIAL SUPPORT; SPECIMEN HANDLING; UNITED STATES;

EID: 77957749180     PISSN: 15517144     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.cct.2010.06.007     Document Type: Note

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