Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions

BMC Medical Research Methodology

Volumn 16, Issue 1, 2016, Pages 1-11

  Smith, Maureen E ^a   Sanderson, Saskia C ^b,c   Brothers, Kyle B ^d   Myers, Melanie F ^e   McCormick, Jennifer ^f   Aufox, Sharon ^a   Shrubsole, Martha J ^g   Garrison, Nanibaá A ^h   Mercaldo, Nathaniel D ^g   Schildcrout, Jonathan S ^g   Clayton, Ellen Wright ^g   Antommaria, Armand H Matheny ^e   Basford, Melissa ^g   Brilliant, Murray ⁱ   Connolly, John J ^j   Fullerton, Stephanie M ^k   Horowitz, Carol R ^b   Jarvik, Gail P ^k   Kaufman, Dave ^l   Kitchner, Terri ⁱ   Li, Rongling ^l   Ludman, Evette J ^m   McCarty, Catherine ⁿ   McManus, Valerie ⁱ   Stallings, Sarah ^g   Williams, Janet L ^o   Holm, Ingrid A ^p   more..

^a NORTHWESTERN UNIVERSITY   (United States)

^b MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^c UNIVERSITY COLLEGE LONDON   (United Kingdom)

^d University of Louisville School of Medicine   (United States)

^e CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^f PENN STATE COLLEGE OF MEDICINE   (United States)

^g VANDERBILT UNIVERSITY MEDICAL CENTER   (United States)

^h SEATTLE CHILDREN S RESEARCH INSTITUTE   (United States)

ⁱ MARSHFIELD CLINIC   (United States)

^j CHILDREN S HOSPITAL OF PHILADELPHIA   (United States)

^k UNIVERSITY OF WASHINGTON   (United States)

^l NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^m GROUP HEALTH RESEARCH INSTITUTE   (United States)

ⁿ ESSENTIA INSTITUTE OF RURAL HEALTH   (United States)

^o GEISINGER HEALTH SYSTEM   (United States)

^p HARVARD MEDICAL SCHOOL   (United States)

more..

Author keywords

Cognitive interviews; Consent; Genomics; Institutional Review Board; Multi site; Pilot; Survey

Indexed keywords

CONFIDENTIALITY; ELECTRONIC HEALTH RECORD; GENOME-WIDE ASSOCIATION STUDY; HUMAN; INFORMATION DISSEMINATION; INFORMED CONSENT; NATIONAL HEALTH ORGANIZATION; PATIENT PARTICIPATION; PATIENT RIGHT; PROCEDURES; QUESTIONNAIRE; STATISTICS AND NUMERICAL DATA; UNITED STATES;

CONFIDENTIALITY; ELECTRONIC HEALTH RECORDS; GENOME-WIDE ASSOCIATION STUDY; HUMANS; INFORMATION DISSEMINATION; INFORMED CONSENT; NATIONAL HUMAN GENOME RESEARCH INSTITUTE (U.S.); PATIENT PARTICIPATION; PATIENT RIGHTS; SURVEYS AND QUESTIONNAIRES; UNITED STATES;

EID: 84996761466     PISSN: None     EISSN: 14712288     Source Type: Journal    
DOI: 10.1186/s12874-016-0263-7     Document Type: Article

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