Idioma:

Testing the feasibility of a National Spina Bifida Patient Registry

Thibadeau, Judy K. ; Ward, Elisabeth A. ; Soe, Minn M. ; Liu, Tiebin ; Swanson, Mark ; Sawin, Kathleen J. ; Freeman, Kurt A. ; Castillo, Heidi ; Rauen, Karen ; Schechter, Michael S.

Birth defects research. A Clinical and molecular teratology, 2013-01, Vol.97 (1), p.36-41 [Periódico revisado por pares]

Hoboken: Wiley Subscription Services, Inc., A Wiley Company

Texto completo disponível

Citações Citado por

Enviar para

Título:
Testing the feasibility of a National Spina Bifida Patient Registry
Autor: Thibadeau, Judy K. ; Ward, Elisabeth A. ; Soe, Minn M. ; Liu, Tiebin ; Swanson, Mark ; Sawin, Kathleen J. ; Freeman, Kurt A. ; Castillo, Heidi ; Rauen, Karen ; Schechter, Michael S.
Assuntos: Adolescent ; Biological and medical sciences ; Centers for Disease Control and Prevention, U.S ; Child ; Child, Preschool ; Databases, Factual ; Demography ; Diseases of the osteoarticular system ; Diseases of the spine ; Electronic Health Records ; Feasibility Studies ; Female ; Health Status ; Humans ; Longitudinal Studies ; Male ; Malformations and congenital and or hereditary diseases involving bones. Joint deformations ; Medical sciences ; Meningomyelocele - diagnosis ; Meningomyelocele - epidemiology ; Meningomyelocele - physiopathology ; Population Surveillance - methods ; quality improvement ; Registries ; registry ; spina bifida ; spina bifida clinic ; Spinal Dysraphism - diagnosis ; Spinal Dysraphism - epidemiology ; Spinal Dysraphism - physiopathology ; United States ; Young Adult
É parte de: Birth defects research. A Clinical and molecular teratology, 2013-01, Vol.97 (1), p.36-41
Notas: The authors have no conflicts of interest to report.
The National Spina Bifida Patient Registry is funded by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, grant #1UO1DDD000744.01.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
ark:/67375/WNG-259ZXMFP-D
ArticleID:BDRA23094
istex:D695023E90DF92E15D540941C970E04C541D1959
Descrição: BACKGROUND The purpose of this study was to describe the development and early implementation of a national spina bifida (SB) patient registry, the goal of which is to monitor the health status, clinical care, and outcomes of people with SB by collecting and analyzing patient data from comprehensive SB clinics. METHODS Using a web‐based, SB‐specific electronic medical record, 10 SB clinics collected health‐related information for patients diagnosed with myelomeningocele, lipomyelomeningocele, fatty filum, or meningocele. This information was compiled and de‐identified for transmission to the Centers for Disease Control and Prevention (CDC) for quality control and analysis. RESULTS A total of 2070 patients were enrolled from 2009 through 2011: 84.9% were younger than 18 years of age; 1095 were women; 64.2% were non‐Hispanic white; 6.5% were non‐Hispanic black or African American; and 24.2% were Hispanic or Latino. Myelomeningocele was the most common diagnosis (81.5%). CONCLUSIONS The creation of a National Spina Bifida Patient Registry partnership between the CDC and SB clinics has been feasible. Through planned longitudinal data collection and the inclusion of additional clinics, the data generated by the registry will become more robust and representative of the population of patients attending SB clinics in the United States and will allow for the investigation of patient outcomes. Birth Defects Research (Part A), 2013. © 2012 Wiley Periodicals, Inc.
Editor: Hoboken: Wiley Subscription Services, Inc., A Wiley Company
Idioma: Inglês

Links

Voltar para lista de resultados

Anterior Resultado 3 Avançar Ir para próxima página

Realização: Logos de Redes Sociais:

Testing the feasibility of a National Spina Bifida Patient Registry

Thibadeau, Judy K. ; Ward, Elisabeth A. ; Soe, Minn M. ; Liu, Tiebin ; Swanson, Mark ; Sawin, Kathleen J. ; Freeman, Kurt A. ; Castillo, Heidi ; Rauen, Karen ; Schechter, Michael S.

Hoboken: Wiley Subscription Services, Inc., A Wiley Company

Buscando em bases de dados remotas. Favor aguardar.