Developing an Amish and Mennonite research registry in Western Pennsylvania

[摘要] The Amish and Mennonites of western Pennsylvania are genetically isolated religious communities that are disproportionally burdened by genetic disease due to founder and bottleneck effects from their European migration in the 17th century. Research studies to better understand the types of conditions in the communities, the natural history of these conditions, as well as health care needs of these communities, will allow for more targeted delivery of appropriate healthcare interventions. However, barriers exist for identifying and ascertaining appropriate members of the Plain Community for research studies. The Plain Community is considered a vulnerable population because of their unique cultural identity, relative isolation, and limited utilization of mainstream to healthcare. Vulnerable groups are often difficult to reach, however, there has been support for community based research registries as a way to address disparities for access to and participation in research. An Amish and Mennonite Research Registry was developed in western Pennsylvania to diminish these barriers and provide a platform for contacting willing members of the Plain Community for participation in future research projects that may positively impact future medical care, as well as the general care in their communities. Improving working relationships among Amish, Mennonites, and researchers has public health significance because it could improve health care delivery to the Plain Communities in western Pennsylvania. We developed a culturally appropriate approach for recruiting and consenting members of this vulnerable population. This paper reports on the development and implementation process of the research registry and its public health importance.

[发布机构] the University of Pittsburgh