The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

Orphanet Journal of Rare Diseases

Volumn 11, Issue 1, 2016, Pages

  Merkel, Peter A ^a   Manion, Michele ^b   Gopal Srivastava, Rashmi ^c   Groft, Stephen ^c   Jinnah, H A ^d   Robertson, David ^e   Krischer, Jeffrey P ^f  

^a UNIVERSITY OF PENNSYLVANIA   (United States)

^b PCD Foundation   (United States)

^c NATIONAL INSTITUTES OF HEALTH   (United States)

^d EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

^e VANDERBILT UNIVERSITY   (United States)

^f UNIVERSITY OF SOUTH FLORIDA   (United States)

Author keywords

Network; Patient engagement; Rare diseases

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; CLINICAL PRACTICE; CLINICAL RESEARCH; DATA MINING; FUNDING; INFORMATION PROCESSING; MEDICAL EDUCATION; PATIENT ADVOCACY; RARE DISEASE; SOCIAL MEDIA; COOPERATION; HUMAN; INTERPERSONAL COMMUNICATION; METHODOLOGY; OUTCOME ASSESSMENT; REGISTER; UNITED STATES;

COMMUNICATION; COOPERATIVE BEHAVIOR; DATA COLLECTION; HUMANS; OUTCOME ASSESSMENT (HEALTH CARE); PATIENT ADVOCACY; RARE DISEASES; REGISTRIES; RESEARCH DESIGN; UNITED STATES;

EID: 84971571541     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-016-0445-8     Document Type: Article

References (12)

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