Project awarded $250K to increase inclusion in research for people with intellectual and developmental disabilities

 A team at the University of Kansas has been approved for a $250,000 funding award by the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute. The funds will support a project designed to expand inclusion in research for people with intellectual and developmental disabilities (IDD).

Led by researcher Karrie Shogren, director of the KU Life Span Institute’s Kansas University Center on Developmental Disabilities (KUCDD), the project aims to enable opportunities for people with IDD to engage in research that affects them.

“I have been privileged to partner with people with disabilities to develop interventions and supports to enable people with intellectual and developmental disabilities to challenge the biases that they face, identify the futures they want and the goals and supports that will get them there,” Shogren said.

Recently named Ross and Marianna Beach Distinguished Professor of Special Education in the KU School of Education & Human Sciences, Shogren is a senior scientist at the Life Span Institute and associate director of the Beach Center on Disability.

The PCORI-funded project, with additional support from KUCDD, will begin by connecting people with IDD and their family members with clinicians, policymakers, researchers and other interested groups in a new network titled Kansas Health and Research Partnership.

Activities of the network will include recruiting, hosting monthly meetings and a learning series for adults with intellectual and developmental disabilities on inclusive research, developing a plain language report, distributing project materials and creating a research agenda that targets participation of people with intellectual and developmental disabilities as researchers.

Shogren’s research is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research and disseminate PCORI-funded study results. PCORI is an independent organization that funds research to provide patients, their caregivers and clinicians with the evidence-based information needed to make better informed health care decisions.

“This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in CER and develop partnerships and infrastructure to disseminate PCORI-funded research results,” said Greg Martin, PCORI’s acting chief engagement and dissemination officer. “We look forward to working with the University of Kansas throughout the course of the 24 months of the project.”

According to PCORI, Shogren’s project was selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria.