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Related Concept Videos

Intellectual Disability01:29

Intellectual Disability

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Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
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Learning Disabilities01:25

Learning Disabilities

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Learning disabilities are cognitive disorders caused by neurological impairments that affect cognitive functions like language and reading, without indicating overall intellectual or developmental challenges. These disabilities differ from global intellectual or developmental disabilities as they are limited to distinct cognitive functions. Common learning disabilities include dysgraphia, dyslexia, and dyscalculia, each of which impacts unique aspects of learning.
Dyslexia
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A Roadmap for Accelerating Research in Intellectual and Developmental Disabilities Using PCORnet®.

Michelle Scotton Franklin1, Rowena J Dolor2, Steph Hendren3

  • 1Department of Psychiatry and Behavioral Sciences and Core Faculty at Duke-Margolis Center for Health Policy, Duke University, Durham, NC.

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Summary
This summary is machine-generated.

This study identified key research gaps in intellectual/developmental disabilities (IDD) clinical care. It prioritized patient-centered questions for comparative clinical effectiveness research (CER) using PCORnet to improve health outcomes for people with IDD.

Keywords:
comparative clinical effectiveness research (CER)developmental disabilitiesinclusive researchintellectual disabilitiespatient-centered outcomes

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Area of Science:

  • Health Services Research
  • Clinical Effectiveness Research
  • Disability Studies

Background:

  • National-scale research is crucial for identifying individuals with intellectual/developmental disabilities (IDD).
  • Effective interventions and quality of care evaluations are needed across the lifespan for people with IDD (PwIDD).
  • Addressing health inequities requires improved research and care for PwIDD.

Purpose of the Study:

  • Identify critical knowledge gaps in IDD clinical care.
  • Prioritize patient-centered comparative clinical effectiveness research (CER) questions answerable by PCORnet.
  • Develop recommendations to advance CER for PwIDD.

Main Methods:

  • Convened Workgroup members with diverse expertise (research, clinical, lived experience).
  • Conducted literature scans and data queries of PCORnet resources.
  • Surveyed PCORnet partner sites to assess infrastructure and identify knowledge/infrastructure gaps.

Main Results:

  • PCORnet sites serve a large population of individuals with IDD, including over 300,000 with autism.
  • High utilization of emergency department (19%-35%) and inpatient services (8%-31%) observed across IDD conditions.
  • Identified 3 broad evidence gaps and formulated CER questions to address them.

Conclusions:

  • Provided insights into current knowledge gaps in IDD clinical care.
  • Highlighted the utility of PCORnet for improving cohort ascertainment in IDD CER.
  • Recommended enhancements to the PCORnet Common Data Model (CDM) for standardized IDD-focused data elements.