Informed consent process for patient participation in rare disease registries linked to biorepositories

Contemporary Clinical Trials

Volumn 33, Issue 1, 2012, Pages 5-11

  Rubinstein, Yaffa R ^a   Groft, Stephen C ^a   Chandros, Sara Hull ^b   Kaneshiro, Julie ^c   Karp, Barbara ^a   Lockhart, Nicole C ^d   Marshall, Patricia A ^e   Moxley, Richard T ^f   Pollen, Geraldine B ^a   Miller, Vanessa Rangel ^g   Schwartz, Jack ^h  

^a NATIONAL INSTITUTES OF HEALTH   (United States)

^b NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^c U S DEPARTMENT OF HEALTH AND HUMAN SERVICES   (United States)

^d NATIONAL CANCER INSTITUTE   (United States)

^e CASE WESTERN RESERVE UNIVERSITY   (United States)

^f UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE AND DENTISTRY   (United States)

^g Innolyst Inc   (United States)

^h UNIVERSITY OF MARYLAND SCHOOL OF LAW   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CLINICAL DATA REPOSITORY; CLINICAL RESEARCH; CLINICAL TRIAL (TOPIC); DISEASE REGISTRY; INFORMED CONSENT; MEDICAL INFORMATION; MEDICAL RESEARCH; NATIONAL HEALTH ORGANIZATION; NOTE; PATIENT ADVOCACY; PATIENT AUTONOMY; PATIENT DECISION MAKING; PATIENT IDENTIFICATION; PATIENT INFORMATION; PATIENT PARTICIPATION; QUALITY OF LIFE; RARE DISEASE;

BIOLOGICAL SPECIMEN BANKS; HUMANS; INFORMED CONSENT; PATIENT PARTICIPATION; RARE DISEASES; REGISTRIES; TISSUE DONORS;

EID: 84855347107     PISSN: 15517144     EISSN: 15592030     Source Type: Journal    
DOI: 10.1016/j.cct.2011.10.004     Document Type: Note

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