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Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening.
Kellar-Guenther, Yvonne; Barringer, Lauren; Raboin, Katherine; Nichols, Ginger; Chou, Kathy Y F; Nguyen, Kathy; Burke, Amy R; Fawbush, Sandy; Meyer, Joyal B; Dorsey, Morna; Brower, Amy; Chan, Kee; Lietsch, Mei; Taylor, Jennifer; Caggana, Michele; Sontag, Marci K.
Afiliación
  • Kellar-Guenther Y; Center for Public Health Innovation, Evergreen, CO 80439, USA.
  • Barringer L; Childrens Hospital Colorado, Aurora, CO 80045, USA.
  • Raboin K; Connecticut Newborn Screening Network, Connecticut Children's, Hartford, CT 06106, USA.
  • Nichols G; Connecticut Newborn Screening Network, Connecticut Children's, Hartford, CT 06106, USA.
  • Chou KYF; Newborn Screening Program, Wadsworth Center, New York State Department of Health, Albany, NY 12208, USA.
  • Nguyen K; Division of Allergy & Immunology, Department of Pediatrics, University of California, San Francisco, CA 94143, USA.
  • Burke AR; North Dakota Health & Human Services Newborn Screening Program, Bismarck, ND 58505, USA.
  • Fawbush S; HealthTech Solutions, Frankfort, KY 40601, USA.
  • Meyer JB; North Dakota Health & Human Services Newborn Screening Program, Bismarck, ND 58505, USA.
  • Dorsey M; Division of Allergy & Immunology, Department of Pediatrics, University of California, San Francisco, CA 94143, USA.
  • Brower A; American College of Genetics and Genomics, Bethesda, MD 20814, USA.
  • Chan K; American College of Genetics and Genomics, Bethesda, MD 20814, USA.
  • Lietsch M; American College of Genetics and Genomics, Bethesda, MD 20814, USA.
  • Taylor J; American College of Genetics and Genomics, Bethesda, MD 20814, USA.
  • Caggana M; Newborn Screening Program, Wadsworth Center, New York State Department of Health, Albany, NY 12208, USA.
  • Sontag MK; Center for Public Health Innovation, Evergreen, CO 80439, USA.
Int J Neonatal Screen ; 10(2)2024 May 15.
Article en En | MEDLINE | ID: mdl-38804359
ABSTRACT
Newborn screening (NBS) is hailed as a public health success, but little is known about the long-term outcomes following a positive newborn screen. There has been difficulty gathering long-term follow-up (LTFU) data consistently, reliably, and with minimal effort. Six programs developed and tested a core set of minimal LTFU data elements. After an iterative data collection process and the development of a data collection tool, the group agreed on the minimal LTFU data elements. The denominator captured all infants with an NBS diagnosis, accounting for children who moved or died prior to the follow-up year. They also agreed on three LTFU

outcomes:

if the child was still alive, had contact with a specialist, and received appropriate care specific to their diagnosis within the year. The six programs representing NBS public health programs, clinical providers, and research programs provided data across multiple NBS disorders. In 2022, 83.8% (563/672) of the children identified by the LTFU programs were alive and living in the jurisdiction; of those, 92.0% (518/563) saw a specialist, and 87.7% (494/563) received appropriate care. The core LTFU data elements can be applied as a foundation to address the impact of early diagnosis by NBS within and across jurisdictions.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Int J Neonatal Screen Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Suiza
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Int J Neonatal Screen Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Suiza