Plain Community Health Consortium Project

Plain Communities are descendants of Anabaptists who emigrated from Europe to the United States in the 16^th century. Incidence of certain rare genetic conditions is elevated among Plain Communities due to common cultural heritage and population isolation. Despite the high incidence of these conditions, patient-centered outcomes research/comparative effectiveness research (PCOR/CER) studies that support family care decisions are lacking. Furthermore, due to the unique cultural practices of this community, authentic engagement of families throughout the research process is challenging and uncommon. The PCHC will work with Plain Community members to develop culturally appropriate pathways to engage the community in all aspects of the research process and develop governance for conducting rare disease PCOR/CER projects. The goal of the PCHC project is to build capacity for PCHC members to develop and execute PCOR/CER studies that inform decision making for Plain families impacted by rare genetic disorders.