Intellectual and/or Developmental Disabilities
As part of the 2019 legislation that reauthorized PCORI’s funding for 10 years, Congress included research on intellectual and developmental disabilities as a priority topic for PCORI.
More about Intellectual and/or Developmental Disabilities (IDD)
Developmental disabilities are chronic and begin either at birth or during the developmental period, and they cause physical, learning, language, and/or behavioral impairments. Intellectual disabilities, a type of developmental disability, involve limitations to cognitive function—such as learning, reasoning, and problem solving—and adaptive behavior. Not all developmental disabilities include limitations in cognitive ability. There are approximately 7 to 8 million people in the United States with IDD, representing about 3 percent of the population, according to federal data.
Individuals with IDD often have special healthcare needs. This issue is particularly critical for adolescents with IDD as they transition from pediatric to adult-oriented healthcare settings with fewer support systems, including care planning and coordination. In addition, as with so many health conditions, people of color with IDD are subject to even greater health disparities compared to their peers from other groups.
Examining Treatment for Sleep Disorders among People with Developmental Disabilities
Sleep disorders can be a source of stress for people with developmental disabilities and their caregivers. We’re pleased to release a topic brief on treatment for insomnia and other sleep disturbances among people with developmental disabilities.
Over time, problems with sleep in this population can contribute to cognitive and behavioral issues or worsen existing ones. However, evidence on treatment is sparse. The brief identifies existing evidence for treatment of sleep disorders as well as research gaps and evidence needs.
Recently Funded Research Studies
In November 2022, PCORI announced nearly $7 million in new funding to support two research studies that will compare approaches to reduce anxiety and depression among individuals with IDD. One of them is focusing on autistic adults, while the other is focusing on autistic youth.
2021 PCORI Virtual Annual Meeting
The 2021 meeting included a breakout session about engaging people with IDD in research.
Learn more about the PCORI-hosted stakeholder meetings and workshops relating to intellectual and developmental disabilities.