Practical aspects of recruitment and retention in clinical trials of rare genetic diseases: The phenylketonuria (PKU) experience

Journal of Genetic Counseling

Volumn 23, Issue 1, 2014, Pages 20-28

  Deward, Stephanie J ^a   Wilson, Ashley ^b   Bausell, Heather ^c   Volz, Ashley S ^d   Mooney, Kimberly ^d  

^a CHILDREN S HOSPITAL OF PITTSBURGH   (United States)

^b HOSPITAL FOR SICK CHILDREN   (Canada)

^c CHILDREN'S MEMORIAL HOSPITAL   (United States)

^d BIOMARIN PHARMACEUTICAL INC   (United States)

Author keywords

Clinical trials; Genetic diseases; Rare diseases; Recruitment

Indexed keywords

ARTICLE; GENETICS; HUMAN; HUMAN RELATION; PHENYLKETONURIA; SELF HELP; SOCIAL MEDIA;

HUMANS; PHENYLKETONURIAS; PROFESSIONAL-PATIENT RELATIONS; SELF-HELP GROUPS; SOCIAL MEDIA;

EID: 84897618850     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-013-9642-y     Document Type: Article

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