The Patient-Centered Outcomes Research Institute (PCORI) intends to release the Intellectual and Developmental Disabilities (IDD) Topical PCORI Funding Announcement (PFA) on April 1, 2025.
Through this Topical PFA, PCORI seeks to fund high-quality patient-centered comparative clinical effectiveness research (CER) studies that address evidence gaps important to people with IDD and meaningful decisional dilemmas people with IDD face when seeking and obtaining health care.
Applications may propose CER studies of screening, diagnostic and treatment approaches; pharmacologic and/or non-pharmacologic interventions; or system-level strategies delivered in hospital, clinic or community settings to improve patient-centered outcomes.
Applications proposing novel interventions and/or aiming to develop 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.
PCORI is particularly interested in submissions that address the following Special Areas of Emphasis (SAEs). 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:
Oral Health Individuals with IDD have poor oral health compared to people without IDD. Living with poor oral health impacts overall health and wellbeing 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 research 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.
Gastrointestinal Health 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 research 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.
Improving Care DeliveryIndividuals with IDD face barriers to accessing care. PCORI is interested in funding research 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.
PCORI invites AUCD Network members to review the full preannouncement on PCORI’s website for details. The full PFA and all application requirements will be available on the PCORI website April 1, 2025. Those interested in applying can register to attend the Applicant Town Hall on April 7, 2025 at 12 PM ET to learn more about this funding announcement.
Email pfa@pcori.org with questions or submit an inquiry form to speak with a PCORI program officer about this funding opportunity.
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