Development of an international internet-based neurofibromatosis Type 1 Patient registry

Contemporary Clinical Trials

Volumn 34, Issue 2, 2013, Pages 305-311

  Johnson, Kimberly J ^a,b,c   Hussain, Ibrahim ^b   Williams, Katherine ^a   Santens, Ryan ^a   Mueller, Nancy L ^a   Gutmann, David H ^b  

^a WASHINGTON UNIVERSITY IN ST LOUIS   (United States)

^b WASHINGTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c USA   (United States)

Author keywords

Genetic syndrome; Internet; Neurofibromatosis type 1; Online; Rare disease; Registry

Indexed keywords

ADULT; ARTICLE; CANCER REGISTRY; COLOMBIA; DEMOGRAPHY; ELECTRONIC MEDICAL RECORD; FEMALE; HEALTH STATUS; HUMAN; INFORMED CONSENT; INTERNET; MAJOR CLINICAL STUDY; MALE; NEUROFIBROMATOSIS; NEUROFIBROMATOSIS TYPE 1; ONLINE SYSTEM; PATIENT PARTICIPATION; QUESTIONNAIRE; SOCIAL ASPECT; UNITED STATES;

ADOLESCENT; ADULT; AGED; CHILD; CHILD, PRESCHOOL; DATA COLLECTION; FEMALE; HUMANS; INFANT; INTERNET; MALE; MIDDLE AGED; NEUROFIBROMATOSIS 1; RARE DISEASES; REGISTRIES; YOUNG ADULT;

EID: 84872690231     PISSN: 15517144     EISSN: 15592030     Source Type: Journal    
DOI: 10.1016/j.cct.2012.12.002     Document Type: Article

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