Registry for Amish and Mennonite individuals interested in medical research
Research Contact Registry for Members of the Amish and Mennonite Communities
This study is creating a registry to connect Amish and Mennonite individuals in western Pennsylvania with medical research opportunities that focus on their unique health challenges.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | University of Pittsburgh Academic / other |
| Locations | 1 site (Pittsburgh, Pennsylvania) |
| Trial ID | NCT02990572 on ClinicalTrials.gov |
What this trial studies
This registry aims to connect members of the Amish and Mennonite communities in western Pennsylvania with future medical research opportunities. It focuses on understanding the unique genetic health challenges faced by these isolated populations, which have distinct genetic profiles due to their historical migration patterns. By collecting data on family medical histories, the registry facilitates targeted research that can lead to improved healthcare tailored to the specific needs of these communities. The initiative seeks to enhance knowledge about genetic disorders prevalent among the Plain people and improve access to specialized care.
Who should consider this trial
Good fit: Ideal candidates for this registry are Amish and Mennonite individuals aged 18 and older, as well as children with parental consent.
Not a fit: Individuals who do not belong to the Amish or Mennonite communities or those who do not speak English may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to better understanding and treatment of genetic disorders affecting the Amish and Mennonite populations.
How similar studies have performed: While this approach is novel in the context of the Amish and Mennonite communities, similar registries have shown success in other isolated populations.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Amish and Mennonite men and women age 18 or older * Amish and Mennonite children with the permission of a parent Exclusion Criteria: * Amish and Mennonite men and woman age 18 or older who do not speak English * Those who are not Amish or Mennonite
Where this trial is running
Pittsburgh, Pennsylvania
- Children's Hospital of Pittsburgh — Pittsburgh, Pennsylvania, United States (Recruiting)
Study contacts
- Principal investigator: Lina Ghaloul Gonzalez, MD — University of Pittsburgh
- Study coordinator: Jerome Doerger, BFA, MS, MPH, LCGC
- Email: doergerj@upmc.edu
- Phone: 412-692-7349
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.