Amish and Mennonite Research Registry

Research Contact Registry for Members of the Amish and Mennonite Communities

Protocol Description

Through this study, researchers will be collecting and analyzing data about people from the Plain Communities (Old Order Amish and Mennonite), which have inherited medical conditions that are unique to their population groups due to geographic and social isolation. The study collects observational and standard-of-care data, but does not involve any treatment or intervention. Analysis may lead to insights that can help physicians learn more about treating people with these conditions. Additionally, the database will help researchers identify and recruit patients eligible for participation in future studies.

Eligibility Criteria

Male and female members of the Plain Communities of all ages are eligible for inclusion in the research registry.
Males and Females: All ages

Requirements

With consent, medical record information, including medical history, diagnoses, test results, and information about future diagnoses will be included in the study database.
Visits: None beyond normal clinical care
Duration: Not applicable

Status: Open to Enrollment

Source(s) of Support

Medical Genetics Division, Department of Pediatrics, Children’s Hospital of Pittsburgh of UPMC

Primary Investigator

Gerard Vockley, MD, PhD

Contact Information

For more information about the study or enrollment, please contact:
Catherine M. Walsh Vockley, MS, LCGC
412-692-5070