Individuals with intellectual and developmental disabilities (IDD) have significant oral health problems that impact their health and quality of life. No empirical information exists to support oral health preventive or disease management strategies known to be effective for individuals with IDD. The Oral Health Partnership (OHP) formed during Tier I to bring forth new perspectives—identified by adults with IDD, their family members, paid caregivers, and advocates who support them—will culminate in the development of a timeline for a patient-centered comparative effectiveness research (CER) proposal. With the refinement of our governance and recruitment strategies document, and the identification of CER ideas, the OHP is well poised to begin efforts to refine the list of CER ideas to a single research question. To strengthen OHP’s infrastructure in Tier II, we will sub-contract with the Seven Hills Foundation, an integrated health and human service organization providing a full spectrum of services and supports to persons with IDD and their families.
In Tier II, we propose to operationalize and refine the governance structure developed in Tier I, build capacity for developing a CER research proposal, strengthen and expand the OHP, reach out to stakeholders including national stakeholder organizations, develop a communication plan for disseminating information regarding the OHP project and future research outcomes, and identify a research question and a timeline for the development of a CER proposal that addresses the needs of patients with IDD in the context of their lives and circumstances.