PCORI: Addressing Health Outcomes for Individuals with Intellectual and Developmental Disabilities and/or Rare Diseases

If you are interested in the following opportunity, please contact Carole King at [email protected].

• LOI Due: September 8, 2026
• Amount: Up to $12,000,000 (plus 40% indirects)
• ProjectPeriod: Up to five years

This funding opportunity supports large-scale, patient-centered comparative clinical effectiveness research (CER) focused on individuals with intellectual and developmental disabilities (IDD) and/or rare diseases (RD). The goal is to generate evidence on which existing interventions, care models, or approaches work best in real-world settings for these often underserved populations.  Applicants do not need to address both IDD and RD.

Special Areas of Emphasis:

1. Better Health Outcomes by Improving Access to Patient-Centered Care
2. Health System Approaches to Improving Care Transitions
3. Pharmacologic and Nonpharmacologic Approaches to Improving Physical and Mental Health
4. Addressing the Health and Well-Being of Caregivers for Individuals with Intellectual and Developmental Disabilities and Rare Diseases

Applicants are encouraged to propose individual- or cluster-randomized controlled trials; however, observational studies (including natural experiments) that are well-specified will also be considered.  Patients and other healthcare partners are expected to meaningfully contribute their lived experience or professional expertise to ensure studies are patient-centered, relevant and useful for healthcare decision making.