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J Pediatr. 2010 Mar;156(3):420-6. doi: 10.1016/j.jpeds.2009.09.068. Epub 2009 Nov 14.

Prevalence of developmental disabilities and receipt of special education services among children with an inborn error of metabolism.

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  • 1Association for University Centers on Disabilities, Silver Spring, MD, USA.

Abstract

OBJECTIVE:

To examine the presence of developmental disabilities and receipt of special education services in children with an inborn error of metabolism.

STUDY DESIGN:

The study population was children born from 1988 through 2001 in whom a metabolic disorder was diagnosed after identification by newborn screening (n = 97) or after clinical identification (n = 34). These children were linked to the Metropolitan Atlanta Development Disability Surveillance Program (MADDSP) and Special Education Database of Metropolitan Atlanta (SEDMA) to determine developmental outcomes at 8 years of age and 3 through 10 years of age, respectively. Medical and educational records were examined to consider factors contributing to developmental outcomes.

RESULTS:

Of 97 children with a metabolic disorder identified with newborn screening, 12 (12.4%) were identified by SEDMA as receiving special education services and 2 (2.7%) were identified by MADDSP as having a developmental disability. Of the 34 children with a clinically identified metabolic disorder, 8 (23.5%) were identified with SEDMA, and 5 (17.2%) were identified with a MADDSP developmental disability.

CONCLUSION:

Early identification and treatment have been successful in limiting the impact of severe developmental disabilities. Continued surveillance and research are needed to monitor less severe developmental outcomes.

PMID:
19914633
DOI:
10.1016/j.jpeds.2009.09.068
[PubMed - indexed for MEDLINE]
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