National down syndrome patient database: Insights from the development of a multi-center registry study

American Journal of Medical Genetics, Part A

Volumn 167, Issue 11, 2015, Pages 2520-2526

  Lavigne, Jenifer ^a   Sharr, Christianne ^b   Ozonoff, Al ^c,d   Prock, Lisa Albers ^c,d   Baumer, Nicole ^c,d   Brasington, Campbell ^a   Cannon, Sheila ^e   Crissman, Blythe ^f   Davidson, Emily ^c,d   Florez, Jose C ^b,c   Kishnani, Priya ^f   Lombardo, Angela ^d   Lyerly, Jordan ^a   McCannon, Jessica B ^b,c   McDonough, Mary Ellen ^b   Schwartz, Alison ^b,c   Berrier, Kathryn L ^f   Sparks, Susan ^a   Stock Guild, Kara ^d   Toler, Tomi L ^b   Vellody, Kishore ^e   Voelz, Lauren ^d   Skotko, Brian G ^b,c   more..

^a LEVINE CANCER INSTITUTE   (United States)

^b MASSACHUSETTS GENERAL HOSPITAL   (United States)

^c HARVARD MEDICAL SCHOOL   (United States)

^d BOSTON CHILDREN S HOSPITAL   (United States)

^e CHILDREN S HOSPITAL OF PITTSBURGH   (United States)

^f DUKE UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

Down syndrome; Patient database; Registry; Trisomy 21

Indexed keywords

ADOLESCENT; ADULT; CHILD; COGNITION; COMPUTER PROGRAM; CONTROLLED STUDY; DOWN SYNDROME; ETHNICITY; FEMALE; GENETIC DATABASE; HEALTH CARE; HEALTH CARE SYSTEM; HUMAN; INFANT; LONGITUDINAL STUDY; MALE; MULTICENTER STUDY; NOTE; PRIMARY MEDICAL CARE; PRIORITY JOURNAL; PROSPECTIVE STUDY; QUALITY CONTROL; RACE; REGISTER; COOPERATION; DEMOGRAPHY; FACTUAL DATABASE; INTERDISCIPLINARY EDUCATION; MULTICENTER STUDY (TOPIC); NEWBORN; PRESCHOOL CHILD; UNITED STATES; YOUNG ADULT;

ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; COOPERATIVE BEHAVIOR; DATABASES, FACTUAL; DEMOGRAPHY; DOWN SYNDROME; FEMALE; HUMANS; INFANT; INFANT, NEWBORN; INTERDISCIPLINARY STUDIES; MALE; MULTICENTER STUDIES AS TOPIC; REGISTRIES; UNITED STATES; YOUNG ADULT;

EID: 84947034430     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.37267     Document Type: Note

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