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Neurodevelopmental conditions and aging: report on the Atlanta Study Group Charrette on Neurodevelopmental Conditions
Matthew P Janicki1, C Michael Henderson, I Leslie Rubin
1Department of Human Development and Disability, University of Illinois at Chicago, Chicago, IL 60608, USA. mjanicki@uic.edu
Insights
Research on aging with neurodevelopmental conditions like autism and Down syndrome is limited. More evidence-based studies are needed to understand long-term health effects and improve care for adults with these lifelong disabilities.
Area of Science:
- Neurodevelopmental Disorders
- Gerontology
- Public Health
Background:
- The Neurodevelopmental Conditions Study Group convened to address the aging process in individuals with developmental disabilities.
- Existing research on lifespan changes in conditions like cerebral palsy and Down syndrome is insufficient for most neurodevelopmental disorders.
Purpose of the Study:
- To examine current knowledge on aging-related effects in neurodevelopmental conditions.
- To identify gaps in research regarding long-term health trajectories and supportive environments.
Main Methods:
- A charrette (intensive working meeting) was held, summarizing proceedings from a conference on aging with developmental disabilities.
- Discussions focused on conditions including autism, cerebral palsy, Down syndrome, fragile X syndrome, Prader-Willi syndrome, spina bifida, and Williams syndrome.
Main Results:
- A significant lack of evidence-based research exists concerning the long-term effects of aging on adults with most neurodevelopmental conditions.
- Published data is more available for cerebral palsy and Down syndrome, but still requires further confirmation.
Conclusions:
- Additional research and clinical investigation are crucial for understanding maturation and aging in adults with neurodevelopmental conditions.
- Recommendations include identifying age-related medical disorders, determining comparative prevalence, understanding risk factors, promoting surveillance and screening, and disseminating health information.
Abstract:
This article provides a summary of the proceedings of the Neurodevelopmental Conditions Study Group charrette held on May 21-22, 2007, in Atlanta, Georgia (USA) and underwritten by the Developmental Disabilities Branch of the U.S. Centers for Disease Control and Prevention and the National Institute for Disability and Rehabilitation Research. The charrette was a part of the conference on "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living." The aim of the charrette was to examine the extant knowledge on aging-related long-term effects and interactions of a number of neurodevelopmental conditions, including autism, cerebral palsy, Down syndrome, fragile X syndrome, Prader-Willi syndrome, spina bifida, and Williams syndrome. The discussants noted that although there is some published information regarding lifespan changes with these disorders, especially cerebral palsy and Down syndrome, there is a lack of confirming evidence for most of these conditions and concluded that additional evidence-based research and investigatory clinical work are needed to better understand the long-term effects of maturation and aging upon adults with these conditions. Primary recommendations included a call for more work toward the identification and description of the presentations and courses of age-related medical disorders that are common among these conditions; determination of the comparative prevalence and incidence of specific medical conditions between persons with neurodevelopmental disabilities and the general population; use of prevalence and incidence data to better understand risk factors for concomitant conditions; promotion of surveillance, screening, and specific treatment protocols for health provision; institution of a program of translational collaborative research related to older-age associated conditions; and dissemination of information related to aging and health to providers and people affected by these conditions.
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