Developmental Support for Infants With Genetic Disorders.

As the technical ability for genetic diagnosis continues to improve, an increasing number of diagnoses are made in infancy or as early as the neonatal period. Many of these diagnoses are known to be associated with developmental delay and intellectual disability, features that would not be clinicall...

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Publicado en:Pediatrics Vol. 145; no. 5; pp. 1 - 11
Autores principales: Wojcik, Monica H., Stewart, Jane E., Waisbren, Susan E., Litt, Jonathan S.
Formato: review tables/charts Journal Article
Publicado: American Academy of Pediatrics May2020
Acceso en línea:Ver este registro en EBSCOhost
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      dt: May2020
      vid: 145
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      pub: American Academy of Pediatrics
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        10.1542/peds.2019-0629
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        atl: Developmental Support for Infants With Genetic Disorders.
      aug:
        au:
          Wojcik, Monica H.
          Stewart, Jane E.
          Waisbren, Susan E.
          Litt, Jonathan S.
        affil: Division of Newborn Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts
      sug:
        subj:
          Hereditary Diseases Diagnosis
          Hereditary Diseases Complications
          Hereditary Diseases Therapy
          Infant Development
          Pediatric Care
          Developmental Disabilities Risk Factors
          Nervous System Diseases Risk Factors
          Patient Discharge
          Neonatal Assessment
          Infant, Premature
          After Care
          Intensive Care, Neonatal
          Early Childhood Intervention
          Treatment Outcomes
      ab: As the technical ability for genetic diagnosis continues to improve, an increasing number of diagnoses are made in infancy or as early as the neonatal period. Many of these diagnoses are known to be associated with developmental delay and intellectual disability, features that would not be clinically detectable at the time of diagnosis. Others may be associated with cognitive impairment, but the incidence and severity are yet to be fully described. These neonates and infants with genetic diagnoses therefore represent an emerging group of patients who are at high risk for neurodevelopmental disabilities. Although there are well-established developmental supports for high-risk infants, particularly preterm infants, after discharge from the NICU, programs specifically for infants with genetic diagnoses are rare. And although previous research has demonstrated the positive effect of early developmental interventions on outcomes among preterm infants, the impact of such supports for infants with genetic disorders who may be born term, remains to be understood. We therefore review the literature regarding existing developmental assessment and intervention approaches for children with genetic disorders, evaluating these in the context of current developmental supports postdischarge for preterm infants. Further research into the role of developmental support programs for early assessment and intervention in high-risk neonates diagnosed with rare genetic disorders is needed.
      pubtype: Academic Journal
      doctype:
        review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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