Research Contact Registry for Members of the Amish and Mennonite Communities

The Amish and Mennonite communities of western Pennsylvania are unique because they are isolated both geographically and socially. These groups originally migrated as a small group from Europe. Since this first settlement there have been additional migration events within North America that have resulted in many distinct communities. These events lead to genetic founder effects, genetic bottleneck effects and virtually zero genetic inflow. The result has been an increased burden of genetic disease on these vulnerable communities. Specific founder genes explain the prevalence of different genetic conditions within each community and family group. This means that families and communities will have a clustering of certain genetic conditions, while the prevalence among the Plain people as a whole remains low. Understanding the specific needs of each family and community group is important in order to deliver comprehensive and specialized care. This requires research studies and needs assessments within these communities. Currently this need is being addressed in eastern Pennsylvania by the Clinic for Special Children in Strasburg. This organization has conducted research to improve access and quality of care for these Plain Communities. There is an apparent need for a similar understanding and relationship with the Plain Communities of western Pennsylvania.

Currently, a barrier exists for identifying and ascertaining appropriate individuals within the Plain Community for new research studies. This is largely due to their social and geographical isolation related to religious and cultural practices. Improving research and understanding within Plain Communities has the potential to improve early diagnosis, interventions, and clinical outcomes. Creating an ongoing registry will moderate these barriers and provide a platform for contacting willing members of the Plain Community for participation in future research projects that may positively impact their medical care, as well as the general care in their communities.

This is not a study but a registry. Potential participants will be educated about the intent of the registry, and written informed consent will be obtained to allow for collection and storage of information in the registry for an indefinite period of time. At the time of consent, potential participants will be informed about what it means to be a part of the registry and the potential for contact and recruitment to future research studies.

One-on-one interviews with a clinician, or with primary and co-investigators, will be conducted. This interview may take place in a clinic setting or the participants home or regional environment. The primary goal of the interview will be to collect a detailed family and medical history of each participant. This will be used to build a detailed pedigree of members of this community. Medical information obtained through released medical records will be included in the registry. Basic demographic and contact information will also be included in the registry.

Subjects information will be stored in the host PhenoTips database and data will be regularly undated and reviewed. Participants may be contacted for future research studies.