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National down syndrome patient database: Insights from the development of a multi-center registry study.
Lavigne, Jenifer; Sharr, Christianne; Ozonoff, Al; Prock, Lisa Albers; Baumer, Nicole; Brasington, Campbell; Cannon, Sheila; Crissman, Blythe; Davidson, Emily; Florez, Jose C; Kishnani, Priya; Lombardo, Angela; Lyerly, Jordan; McCannon, Jessica B; McDonough, Mary Ellen; Schwartz, Alison; Berrier, Kathryn L; Sparks, Susan; Stock-Guild, Kara; Toler, Tomi L; Vellody, Kishore; Voelz, Lauren; Skotko, Brian G.
Afiliação
  • Lavigne J; Department of Pediatrics, Clinical Genetics, Levine Children's Hospital at Carolinas Healthcare System, Charlotte, North Carolina.
  • Sharr C; Down Syndrome Program, Division of Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
  • Ozonoff A; Harvard Medical School, Boston, Massachusetts.
  • Prock LA; Center for Patient Safety and Quality Research, Program for Patient Safety and Quality, Boston Children's Hospital, Boston, Massachusetts.
  • Baumer N; Harvard Medical School, Boston, Massachusetts.
  • Brasington C; Down Syndrome Program, Division of Developmental Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
  • Cannon S; Harvard Medical School, Boston, Massachusetts.
  • Crissman B; Down Syndrome Program, Division of Developmental Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
  • Davidson E; Department of Pediatrics, Clinical Genetics, Levine Children's Hospital at Carolinas Healthcare System, Charlotte, North Carolina.
  • Florez JC; Down Syndrome Center of Western Pennsylvania, Children's Hospital of Pittsburgh of University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania.
  • Kishnani P; Comprehensive Down Syndrome Program, Division of Medical Genetics, Duke University Medical Center, Durham, North Carolina.
  • Lombardo A; Harvard Medical School, Boston, Massachusetts.
  • Lyerly J; Down Syndrome Program, Division of Developmental Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
  • McCannon JB; Down Syndrome Program, Division of Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
  • McDonough ME; Harvard Medical School, Boston, Massachusetts.
  • Schwartz A; Comprehensive Down Syndrome Program, Division of Medical Genetics, Duke University Medical Center, Durham, North Carolina.
  • Berrier KL; Down Syndrome Program, Division of Developmental Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
  • Sparks S; Department of Pediatrics, Clinical Genetics, Levine Children's Hospital at Carolinas Healthcare System, Charlotte, North Carolina.
  • Stock-Guild K; Down Syndrome Program, Division of Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
  • Toler TL; Harvard Medical School, Boston, Massachusetts.
  • Vellody K; Down Syndrome Program, Division of Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
  • Voelz L; Down Syndrome Program, Division of Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
  • Skotko BG; Harvard Medical School, Boston, Massachusetts.
Am J Med Genet A ; 167A(11): 2520-6, 2015 Nov.
Article em En | MEDLINE | ID: mdl-26249752
The Down Syndrome Study Group (DSSG) was founded in 2012 as a voluntary, collaborative effort with the goal of supporting evidenced-based health care guidelines for individuals with Down syndrome (DS). Since then, 5 DS specialty clinics have collected prospective, longitudinal data on medical conditions that co-occur with DS. Data were entered by clinical staff or trained designees into the National Down Syndrome Patient Database, which we created using REDCap software. In our pilot year, we enrolled 663 participants across the U.S., ages 36 days to 70 years, from multiple racial and ethnic backgrounds. Here we report: (i) the demographic distribution of participants enrolled, (ii) a detailed account of our database infrastructure, and (iii) lessons learned during our pilot year to assist future researchers with similar goals for other patient populations.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Sistema de Registros / Estudos Multicêntricos como Assunto / Bases de Dados Factuais / Síndrome de Down Idioma: En Ano de publicação: 2015 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Sistema de Registros / Estudos Multicêntricos como Assunto / Bases de Dados Factuais / Síndrome de Down Idioma: En Ano de publicação: 2015 Tipo de documento: Article