The Patient-Centered Outcomes Research Institute (PCORI) intends to issue a Topical PCORI Funding Announcement (PFA) on January 9, 2024, seeking to fund high-quality, patient-centered comparative clinical effectiveness research (CER) projects that focus on people with intellectual and developmental disabilities (IDD). This preannouncement provides potential applicants additional time to identify collaborators; obtain patient and stakeholder input on potential studies; and develop responsive, high-quality proposals.
In the forthcoming PFA, PCORI recognizes the diversity of terminology used within the disability community, including both person-first (i.e., people with disabilities) and identity-first (i.e., disabled) language.
For this PFA, developmental disabilities (DD) are chronic disabilities that originate at birth or in the developmental period and cause impairment in physical, learning, language and/or behavioral areas. Intellectual disabilities, which fall under the umbrella term of DD, involve limitations to cognitive function (i.e., reasoning, learning, problem solving) and adaptive behavior. Data estimate that 17.8 percent of US children and adolescents and approximately 0.5 to 1.5 percent of US adults have an IDD diagnosis, impacting 7 to 8 million people living in the United States. Compared to people without IDD, a higher proportion of people with IDD have co-occurring physical and mental health conditions and unmet healthcare needs. Several barriers, including social determinants of health, are associated with a lower level of participation in school, work and play for people with IDD. Physical and mental disparities among those with IDD may be especially pronounced for people belonging to racial and ethnic groups.
Letter of Intent Deadline: Feb. 6, 2024
PCORI is particularly interested in submissions that address the following three Special Areas of Emphasis (SAE). The purpose of identifying these SAEs is to encourage submissions to these areas, not to limit submissions to these topics. Applicants addressing one of the below SAEs should identify the area that is best associated with their research approach:
- Promoting Sleep Health: Individuals with IDD are at increased risk for insomnia and other indicators of poor sleep health, and sleep disturbance is associated with more severe daytime symptoms and worse quality of life. PCORI is interested in the comparative clinical effectiveness of pharmacologic and/or nonpharmacologic interventions that improve sleep health in individuals with IDD. Populations of interest should have IDD and have a diagnosed sleep disorder or poor sleep health of sufficient severity to be disruptive to daily life and/or associated with clinically significant distress.
- Improving Health and Quality of Life in Down Syndrome: People with Down syndrome are more likely to experience co-occurring conditions like obesity and cardiovascular disease, although there is a lack of evidence on whether treatment approaches developed for the general population are also effective in individuals with Down syndrome. PCORI is interested in comparing interventions to improve the health and well-being of individuals with Down syndrome, particularly in approaches addressing mental health/well-being, cardiovascular disease, obesity, diabetes, obstructive sleep apnea and Alzheimer’s disease. Research can be conducted in clinical or community settings, and interventions can be at the individual and/or system level.
- Improving Care Delivery: Despite the availability of evidence-based treatments, there remain barriers to accessing care for people with IDD. PCORI is interested in comparisons of care delivery strategies to improve health outcomes for individuals with IDD. These strategies could include interventions focused on improving access to care, quality of care, or care navigation involving differences in settings of care, utilization of the IDD workforce, informal caregiving, or use of technology. PCORI is especially interested in interventions that also address ableism, bias, stigma and/or discrimination. The proposed care delivery strategies should directly target patient-centered outcomes such as quality of life through increased participation in school or work, healthcare utilization and/or patient-centered economic outcomes.