Intellectual and Developmental Disabilities Topical PCORI Funding

Intellectual and Developmental Disabilities Topical PCORI Funding is sponsored by Patient-Centered Outcomes Research Institute. This funding opportunity supports high-quality, patient-centered comparative clinical effectiveness research (CER) focusing on individuals with intellectual and developmental disabilities (IDD). The goal is to enhance the quality of healthcare delivery for these populations.

Intellectual and Developmental Disabilities Topical PCORI Funding Announcement -- Cycle 2 2025 | PCORI Applications Under Review Intellectual and Developmental Disabilities Topical PCORI Funding Announcement -- Cycle 2 2025 Funding awards under this PFA are expected to be announced April 2026.

This Topical PCORI funding announcement (PFA) seeks to fund high-quality patient-centered comparative clinical effectiveness research (CER) projects that focus on people with intellectual and developmental disabilities.

Research Initiative Highlights PCORI recognizes the variety of terminology used within the disability community, including both person-first (i.e. person with a disability) and identify-first (i.e. disabled person) language. PCORI acknowledges that preference for either form of language varies, and both are acceptable in response to this funding opportunity.

For this PFA, developmental disabilities (DD) are chronic disabilities that originate at birth or in the developmental period and result in differing levels of support in physical, learning, language and/or behavioral areas. Intellectual disabilities, which fall under the umbrella term of DD, involve differences in cognitive function (i.e., reasoning, learning, problem solving) and adaptive behavior. It is estimated that 17.

8 percent of U.S. children and adolescents and approximately 0. 5 to 1. 5 percent of U.S. adults have an IDD diagnosis, impacting 7 to 8 million Americans.

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 health-related social and environmental barriers, 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 certain racial and ethnic groups.

To increase evidence that addresses meaningful decisional dilemmas faced by patients, clinicians (including health and care professionals such as social workers and disability services professionals) and other relevant partners when seeking and obtaining health care and improving patient-centered outcomes, this opportunity aims to fund the comparison of interventions encountered by individuals of all ages who have IDD.

Comparisons can be clinical interventions or systems approaches and can include pharmacological or non-pharmacological interventions.

Some examples include evaluating prevention, screening, diagnosis or treatment strategies; or evaluating dissemination, implementation or health communication strategies that aim to increase the uptake and sustainment of evidence-based practices, improve shared decision making, improve risk communication or improve communication among care teams.

Interventions with established efficacy in the general population, interventions that have been developed or adapted for those with IDD and interventions in widespread use may be acceptable. Applications proposing novel interventions and/or aiming to develop and/or test new technologies (such as mobile apps) or decision support tools/aids will be considered nonresponsive.

Adaptations of efficacious interventions used in the general population may be responsive, but the level of adaptation must be minimal, clearly described and justified a priori. In addition to encouraging investigator-initiated CER proposals, unique to this cycle are three special areas of emphasis (SAEs) that highlight oral health, gastrointestinal health and improving care delivery as possible areas of focus for applications.

The purpose of identifying these SAEs is to encourage submissions to these areas, not to limit submissions to these areas. Applicants addressing one of the below SAEs should identify the area that is best associated with their research approach: Individuals with IDD have poor oral health compared to people without IDD. Living with poor oral health impacts overall health and well-being among individuals with IDD.

There are many barriers to improving oral health among individuals with IDD, including lack of physical accessibility, communication challenges, sensory sensitivities, lack of oral health education, few dentists trained to work with individuals with IDD and lack of IDD-specific care protocols.

PCORI is interested in funding patient-centered CER comparing interventions that can reduce barriers to oral health care and improve the oral health of individuals with IDD. The interventions could improve oral hygiene/self-care, increase access to dental care, improve satisfaction with dental care or reduce pain and discomfort during oral health treatment.

Individuals with IDD experience gastrointestinal (GI) health-related symptoms and disorders, which are notably more prevalent, chronic and often more severe across the lifespan compared to individuals without IDD. There is a lack of screening, diagnostic and treatment interventions that take into consideration the pathophysiological, developmental, cognitive, behavioral and communication needs of people with IDD.

PCORI is interested in funding patient-centered CER comparing interventions that improve the GI health of individuals with IDD.

CER proposals could focus on improving screening and diagnostic accuracy, identifying appropriate treatments through adapting/tailoring current interventions to the IDD population, informing optimal dose/duration/timing of current treatments or increasing the uptake of evidence-based practices through dissemination, implementation, health communication and/or shared decision-making strategies.

Individuals with IDD face barriers to accessing care. PCORI is interested in funding patient-centered CER comparing systems-level care delivery strategies to improve health outcomes for people with IDD. These strategies could include interventions to improve access to care, quality of care and 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 will improve patient-centered outcomes including quality of life, increased community participation, healthcare utilization and patient-centered economic costs. Applicants are strongly encouraged to propose individual- or cluster-randomized controlled trials; however, well-specified natural experiments and well-designed observational studies will also be considered.

Proposed studies should include an overall sample size that will allow precision in the estimation of hypothesized effect sizes and, as appropriate, analysis of heterogeneity of treatment effect. Applicants are encouraged to pay special attention to issues of intervention implementation with an aim of facilitating widespread uptake of findings after completion of the study by utilizing hybrid effectiveness-implementation approaches.

As such, hybrid effectiveness-implementation types 1, 2, and 3 are allowed for this funding opportunity. Studies focused on the development of research methods will not be considered responsive. Applicants should propose well-justified and validated outcomes that are clinically meaningful and considered important by patients, and that can be impacted by the proposed interventions within the study duration.

Applicants should consider, as appropriate, the full range of IDD-related clinical and patient-centered outcomes data relevant to individuals with IDD and other stakeholders. PCORI’s Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research inform the expectations for applicants and the corresponding evaluation of applications submitted in response to this PFA.

This funding announcement will accept applications with direct costs up to $12 million dollars and up to five years in duration. For this funding announcement, applicants may request coverage of patient care costs (including medical products, procedures and care services) for potential funding by PCORI. These costs are included as part of the overall direct cost maximum.

Please contact PCORI at pfa@pcori. org to schedule a consultation. For additional information, please see the full announcement upon posting.

New Engagement Resource and Expectations: PCORI’s Foundational Expectations for Partnerships in Research PCORI requires meaningful patient and partner engagement as a component of the research that it funds. PCORI's Foundational Expectations for Partnerships in Research provides a systematic framework for patient and stakeholder engagement that is firmly built on prior evidence.

Project teams are expected to address PCORI’s Foundational Expectations when applying for PCORI research funding, developing project and engagement plans for awarded projects and reflecting on engagement during a project to improve and strengthen engagement over time. There will be flexibility in how applicants address the Foundational Expectations. View additional information, guidance and resources to support engagement in research.

PCORI encourages all investigators interested in applying to use this inquiry form to submit questions and request to speak with a PCORI program officer.

Download Full Announcement Letter of Intent Deadline Letter of Intent Status Notification To Apply for This Opportunity Read the full funding announcement Follow the process outlined in the Submission Instructions Submit a Letter of Intent Submit an application (if invited) Intellectual and Developmental Disabilities Topical PFA PCORI Topical PFA Submission Instructions PCORI Topical PFA Submission Checklist Intellectual and Developmental Disabilities LOI Template Intellectual and Developmental Disabilities FAQs PCORI Online: Pre-Award User Guide for Research Awards Tips for Preparing a Responsive Letter of Intent (LOI) Intellectual and Developmental Disabilities Topical PFA PCORI Topical PFA Submission Instructions PCORI Topical PFA Submission Checklist Intellectual and Developmental Disabilities FAQs PCORI Online: Pre-Award User Guide for Research Awards Required Application Templates Intellectual and Developmental Disabilities Research Plan Template Methodology Standards Checklist Scientific PI & Key Personnel Template Patient/Stakeholder Partner Template Project/Performance Site(s) and Resources Template Leadership Plan Template (Only required if proposed project is dual-PI) Subcontractor Detailed Budget Template Budget Justification Template Additional Applicant Resources PCORI Methodology Report and Standards Policy on Submission of Research Contract Applications PCORI’s Foundational Expectations for Partnerships in Research Research Fundamentals: Preparing You to Successfully Contribute to Research Building Effective Multi-Stakeholder Research Teams The Value of Engagement in Research Budgeting for Engagement Activities Cost Principles: Description of Allowable Direct Costs under a PCORI Award Standard Contract for Funded Research Projects More Information Health Conditions These are the broad terms PCORI's uses to categorize our funded research studies and other projects, journal articles on engagement in research, and engagement tools and resources.

Specific diseases/conditions are included within the appropriate larger category. Please note that not all of our funded studies focus on a single disease/condition. Some touch on multiple diseases/conditions, research methods, or broader health system interventions, so they won’t be listed by a primary disease/condition and may not appear if you use this filter tool to find them.

Gastrointestinal Disorders Intellectual and Developmental Disabilities Applications Under Review