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Studying intellectual and developmental disabilities (IDD) is imperative to helping close the health disparity gaps many people with IDD face. This vital point and many others were highlighted at the 2023 PCORI Annual Meeting, where panelists discussed the spectrum of PCORI’s funded research aimed at improving mental health in individuals with IDD and the critical role of patient partners in this work.

Developmental disabilities are chronic disabilities that originate at birth or in the developmental period and cause impairment in physical, learning, language or behavioral areas. Intellectual disabilities, which fall under the umbrella term of developmental disabilities, can involve limitations to cognitive function, such as reasoning, learning and problem solving, as well as adaptive behavior. IDDs are usually present at birth and can uniquely affect the trajectory of an individual’s physical, intellectual, and/or emotional development. Many of these conditions can affect multiple body parts or systems. 

Studying intellectual and developmental disabilities (IDD) is imperative due to the health disparities faced by those with IDD.

People with IDD may face lower rates of preventative measures and screenings; higher rates of diabetes, obesity and cardiovascular disease; higher numbers of emergency department visits; and possibly lower life expectancy compared to people without an IDD.

The conditions and social determinants of health in people with IDD may contribute to limitations in participation in school, work and play. The intersectionality is especially pronounced with physical and mental health disparities. Increased research in the IDD space is needed to close the existing gap in health disparities and improve health in people with IDD. 

Transforming the IDD Space

PCORI’s research in IDD has the potential to fill key evidence gaps and improve health. These gaps include inadequate documentation of disability status for people with IDD in medical records; the need for interventions that address provider biases against people with IDD; inadequate screening, diagnosis, and adherence to treatment for co-occurring health conditions; lack of adherence to care pathways; and the need to improve outcomes through a health equity lens.

Through one-on-one conversations, small group meetings and large stakeholder convenings with people with IDD and their caregivers, as well as researchers, clinicians and advocacy organizations, PCORI continues to understand priorities of people with IDD and those who support and care for them. PCORI has been continually committed to delivering short- and long-term research products and resources focused on IDD and funds a wide-ranging portfolio that covers several conditions, such as autism and cerebral palsy, and covers a variety of topics important to those with IDD, including virtual health, mental health and transitions of care, all across the lifespan.  

The Future of IDD Care and Research

In December of 2019, Congress specified IDD as one of two new research priority areas for PCORI. To date, PCORI has awarded $114 million dollars to fund nearly 90 patient-centered comparative clinical effectiveness research studies and research support projects with a focus on individuals with IDD.

As research grows with the IDD population, PCORI is hopeful that this work will increase the evidence-based interventions in IDD care, providing people with IDD with more tailored interventions and effective care to address their specific needs, improve health and reduce inequities. 

All sessions of the 2023 PCORI Annual Meeting are available to stream anytime, anywhere and for free at View the recordings today for a wealth of information on PCORI’s IDD portfolio and much, much more.

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The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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