Funding Sources

Patient-Centered Outcomes Research Institute (PCORI)

IDD-TRANSFORM: Building a Patient-Researcher Collaborative for Health Research About Intellectual and Developmental Disabilities 

November 2021 - October 2023

IDD-TRANSFORM was born with funding from the Patient-Centered Outcomes Research Institute (PCORI). Click here to learn more about PCORI's mission and research. 

Project Mission:

The key objective of this project was to engage with adults with IDD in four pressing topics in health care using patient-centered outcomes research methodologies. The four areas were emergency medicine, geriatric/palliative care, telehealth, and COVID-19 interventions. 


Stanford Alzheimer's Disease Research Center (ADRC)

IDD-TRANSFORM: Building an Engaged and Diverse Community-Based Cohort for Aging, Alzheimer’s, and Down Syndrome

July 2023 - March 2025

Project Mission:

The goal of this project is to engage researchers, health care workers, adults with Down syndrome (DS), DS caregivers, and community agencies/partners to collaboratively design and implement a community-based approach to studying Alzheimer's and Down syndrome. We plan to host focus groups and interviews with adults with DS, caregivers of adults with DS, and community agencies/partners that serve adults with DS/IDD to characterize the knowledge, needs, and lived experiences of adults with Down syndrome with regards to Alzheimer's Disease.


Stanford University Health Equity Action Leadership (HEAL) Network Pilot Grants

IDD-TRANSFORM en Espanol: Expanding a Patient-Researcher Collaborative about Intellectual and Developmental Disabilities to Include Spanish Speaking Patients and Families

August 2023 - July 2024

Project Mission:

The goal of this engagement project is to expand our existing community-academic partnership focused on improving health and healthcare for adults with IDD to Spanish-speaking Latinx patients and caregivers. Spanish-speaking adults with IDD and caregivers likely face additional challenges for their health and healthcare as services may not be culturally-congruent or available in Spanish. It is critical to engage this community in our partnership to ensure that our interventions are responsive to their needs and priorities.


Stanford School of Medicine Office of Community Engagment (OCE) Grant

IDD-TF: Building a Regional Stakeholder Task Force to Address Health Priorities and Equity for People with Intellectual and Developmental Disabilities

July 2023 - June 2024

Project Mission:

The mission of this project is to create a stakeholder map of organizations, agencies and advocacy groups serving people with IDD and their health care needs. These stakeholders, including members of local hospitals, health care organizations, and IDD-serving agencies and organizations, will serve as an IDD-Task Fore that meets over the course of the year to identify and prioritize needs and actions surrounding IDD health and healthcare in the Bay Area.


WITH Foundation Grant

IDD-TRANSFORM Aging and Equity

Project Mission:

The aim of this project is to apply a “design thinking approach” to identify priorities and possible solutions to key areas affecting health and healthcare for aging adults with IDD, such as sleep, fractures and falls, urinary incontinence, and dementia. "Design thinking" is a novel and innovative approach to needs assessment, solution development and participatory engagement for the IDD population.