Long-term developmental outcomes of children identified through a newborn screening program with a metabolic or endocrine disorder: a population-based approach.

Objective: To conduct surveillance of the developmental status of children who screen positive and are diagnosed with a metabolic or endocrine disorder.Study Design: The Centers for Disease Control and Prevention linked three data sources in Georgia: (1) Metropolitan Atlanta Developmental Disabiliti...

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Published in:Journal of Pediatrics Vol. 143; no. 2; pp. 236 - 243
Main Authors: Braun KVN, Yeargin-Allsopp M, Schendel D, Fernhoff P, Van Naarden Braun, Kim, Yeargin-Allsopp, Marshalyn, Schendel, Diana, Fernhoff, Paul
Format: research tables/charts Journal Article
Published: Elsevier B.V. 2003 Aug
Online Access:View this record in EBSCOhost
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      dt: 2003 Aug
      vid: 143
      iid: 2
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      pub: Elsevier B.V.
      place: New York, New York
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        10.1067/s0022-3476(03)00358-5
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        atl: Long-term developmental outcomes of children identified through a newborn screening program with a metabolic or endocrine disorder: a population-based approach.
      aug:
        au:
          Braun KVN
          Yeargin-Allsopp M
          Schendel D
          Fernhoff P
          Van Naarden Braun, Kim
          Yeargin-Allsopp, Marshalyn
          Schendel, Diana
          Fernhoff, Paul
        affil: Developmental Disabilities Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, MS E-86, Atlanta, GA 30333, USA
      sug:
        subj:
          Developmental Disabilities Complications
          Endocrine Diseases Complications
          Metabolism, Inborn Errors Complications
          Child
          Child, Preschool
          Databases, Health
          Disease Surveillance
          Epidemiological Research
          Georgia
          Intellectual Disability
          Neonatal Assessment
          Record Review
          Retrospective Design
          Human
          Child: 6-12 years
          Child, Preschool: 2-5 years
      ab: Objective: To conduct surveillance of the developmental status of children who screen positive and are diagnosed with a metabolic or endocrine disorder.Study Design: The Centers for Disease Control and Prevention linked three data sources in Georgia: (1) Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP), (2) Special Education Database of Metropolitan Atlanta (SEDMA), and (3) State of Georgia Newborn Blood-Spot Screening Program (NBSP).Results: When MADDSP and NBSP were linked (birth cohorts 1981-1991), of an estimated 147 infants who screened positive for a metabolic or endocrine disorder and were at risk for mental retardation if left untreated, only three children were identified with mental retardation. When SEDMA and NBSP were linked (birth cohorts 1981-1995), of an estimated 216 children who screened positive for a metabolic or endocrine disorder, nine children were identified as having a developmental disability less severe than mental retardation, eg, speech and language impairments.Conclusions: Although children found in MADDSP or SEDMA have a low occurrence of developmental disabilities attributable to these metabolic or endocrine disorders, our finding of cases of developmental disabilities of varying severity attributable to a metabolic or endocrine disorder suggests a need for ongoing population-based monitoring of the long-term developmental outcomes of children identified through newborn screening programs.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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