Intellectual and Developmental Disabilities
Approximately 6.5 million people are living with intellectual and developmental disabilities in the United States. (Centers for Disease Control and Prevention)
PCORI has supported 87 research studies and other projects with a focus on intellectual and developmental disabilities. (As of February 2023)
PCORI has awarded about $114 million to fund comparative clinical effectiveness research studies and research-focused projects on intellectual and developmental disabilities. (As of February 2023)
PCORI funds research to help people with intellectual and/or developmental disabilities (IDD) and those who care for them, like their family members and doctors, have more information to make the best healthcare decisions they can, improve healthcare delivery, and reduce health disparities.
|Funding high-priority research||Building capacity for PCOR|
|Dissemination and implementation activities||Enhancing efficiency and research design|
PCORI Funding Announcements (PFAs)
Broad Pragmatic Studies (BPS) -- 2023 Standing PFA
The BPS PFA seeks applications for high-quality comparative clinical effectiveness research projects aligned with PCORI's National Priorities for Health and 12 topic themes, including IDD.
Improving Methods for Conducting PCOR -- 2023 Standing PFA
With this PFA, PCORI aims to fund studies that address high-priority methodological gaps in patient-centered outcomes research (PCOR) and clinical comparative effectiveness research (CER).
Phased Large Awards for Comparative Effectiveness Research (PLACER)
PCORI invites applications for high-quality individual-level or cluster randomized controlled trials of significant scale and scope.
Spotlights: Ongoing Studies and Projects
Supporting Uptake of a School-Based Program to Improve Executive Functioning for Students with ASD and ADHD
Executive functioning problems are common in children with autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD) and can lead to long-term problems in quality of life, academics, and independent function. This Dissemination and Implementation project is supporting uptake across 200 schools in Colorado and Virginia of a program shown by previous, PCORI-supported research to improve executive functioning and classroom behaviors in children with ASD or ADHD.
Peer Support and Research Engagement for Transition Age Youth and Young Adults with IDD
Transition to adulthood is challenging time, especially for youth with an IDD, and there is a dearth of identified effective supports. This Engagement Award project team is conducting an environmental scan on research priorities on peer support strategies and interventions and developing an online training module to engage people with IDD and their caregivers in all stages of research.
Results that Support Better-Informed Decisions
Virtual Evidence-based Healthcare for Underserved Patients with Down Syndrome
It can be challenging for a person with Down syndrome to access recommended care and preventive health screenings. Researchers tested a web-based platform for caregivers to increase adherence to recommended evaluations. People with Down syndrome and their caregivers who used the platform found it easier to receive specialized information about the health services they need.
Preparing Individuals with Intellectual or Developmental Disabilities for Engagement in Research During Public Health Emergencies and Disasters
Engagement of people with an IDD in public health emergencies is limited by increased barriers and risks they experience. This project team identified technologies used by people with an IDD on collaborative research teams and developed a digital toolkit to make remote research accessible to and inclusive of people with an IDD.
Congress Identifies Intellectual and Developmental Disabilities as Research Priority
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 research topic.
Evidence Updates from PCORI-Funded Studies
Antipsychotics for Children with Hyperactivity or Disruptive Disorders
Clinicians often prescribe antipsychotics for children and adolescents diagnosed with attention deficit hyperactivity disorder (ADHD) or disruptive, impulse-control, and conduct disorders (DICDs). A review of research studies weighed the benefits and harms of antipsychotic treatment for children diagnosed with ADHD and DICDs.
Treatment for Insomnia and Other Sleep Disturbances Among Persons with Developmental Disabilities
Many IDDs are associated with increased risk for sleep disorders, which can contribute to or exacerbate cognitive or behavioral issues and cause stress for people with IDD and their caregivers. This topic brief aims to identify existing evidence for interventions to treat sleep disorders in children or adults with IDD.
Breaking Down Barriers for Children with Intellectual and Developmental Disabilities and Their Families
Read about a world-famous puppeteer and a community activist who bring their firsthand experiences with disabilities to a PCORI-funded project to provide easier access to community venues for children with IDDs and their families.
Advancing Health Equity through Research on Transitions for People with IDD
2022 PCORI Virtual Annual Meeting
October 26, 2022
Engaging People with Intellectual and Developmental Disabilities in Research
2021 PCORI Virtual Annual Meeting
November 18, 2021
Additional Studies and Projects
View a selection of additional PCORI-funded research studies and Engagement projects that focus on intellectual and developmental disabilities.
PCORI-hosted stakeholder meetings and workshops offer the opportunity to gain insights and perspectives from members of different stakeholder communities. Watch these webinars to learn more.