Intellectual and Developmental Disabilities

6.5M

Approximately 6.5 million people are living with intellectual and developmental disabilities in the United States. (Centers for Disease Control and Prevention)

87

PCORI has supported 87 research studies and other projects with a focus on intellectual and developmental disabilities. (As of February 2023)

$114M

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.

2023 PCORI Annual Meeting Breakout Session Spotlight

Improving Mental Health for People With IDD Through Patient-Centered Research

Read more about this session

Dismantling Ableism Through Partner-Driven Health Research

Read more about this session

A Multipronged Approach to Improving Health and Well-Being for Individuals with Intellectual and/or Developmental Disabilities
Funding high-priority research Building capacity for PCOR
  • Full range of research awards and evidence synthesis projects
  • Identification of short- and long-term evidence gaps and priorities
  • Engagement awards
  • Community-building projects
  • Workforce awards
  • PCORnet® infrastructure awards
Dissemination and implementation activities Enhancing efficiency and research design
  • Increasing knowledge and awareness of findings from PCORI-funded research
  • Promoting changes in practice based on evidence from PCORI-funded studies
  • Understanding and providing guidance on methodologic issues
  • Increasing engagement in research

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.

View the Evidence Update

Topic Briefs

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.

View the Topic Brief

PCORI Stories

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.

Read the Story

Featured Videos

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.

Comparative Effectiveness of Palliative Surgery versus Additional Anti-Seizure Medications for Lennox-Gastaut Syndrome

Improving the Health of Parents and Their Adolescent and Transition-Age Youth With IDD

Best Practices to Prevent COVID-19 Illness in Staff and People with Serious Mental Illness and Developmental Disabilities in Congregate Living Settings

Efficacy of Pharmacologic Management of ADHD in Children and Youth with Autism Spectrum Disorder

Stakeholder Meetings/Workshops

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.

Video

IDD and Co-Occurring Mental Health Conditions (Virtual) Workshop Recording: October 21, 2021

Event

PCORI Stakeholder Webinar on ADHD in Children and Adolescents

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Video

PCORI Workshop on Methodologic Challenges in Intellectual and Developmental Disabilities Research: March 15, 2021 -- Webinar Recording