Actively Recruiting
Research Contact Registry for Members of the Amish and Mennonite Communities
Led by University of Pittsburgh · Updated on 2026-01-29
1000
Participants Needed
1
Research Sites
208 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are establishing a contact registry for members of the Amish and Mennonite communities in western Pennsylvania to facilitate participation in future medical research. These communities have unique genetic backgrounds due to their social and geographic isolation, leading to specific genetic conditions clustering within families. The registry aims to improve understanding and care by enabling easier identification and recruitment of appropriate individuals for research related to these genetic disorders. The registry is not a treatment study but a long-term resource where participants provide detailed family and medical histories, consent to share medical records, and supply contact information. Interviews with clinicians or investigators will be conducted in various settings, such as clinics or participants' homes, to gather comprehensive data. The collected information will be stored securely and regularly updated to support future research recruitment. Participants will be involved through interviews and sharing medical and family information, which helps build detailed pedigrees. Researchers will monitor the registry over up to 14 years to identify willing participants for future studies. This ongoing process aims to enhance early diagnosis and interventions for genetic conditions affecting these communities while respecting their cultural and social contexts.
CONDITIONS
Brief Title
Amish/Mennonite Research Contact Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Amish and Mennonite men and women age 18 or older
- Amish and Mennonite children with the permission of a parent
You will not qualify if you...
- Amish and Mennonite men and women age 18 or older who do not speak English
- Those who are not Amish or Mennonite
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or at participant's home)
Duration - Up to 14 years
Participants provide detailed family and medical history during an interview and allow access to medical records to build a registry for future research contact.
1 interview visit (in-clinic or at participant's home), with ongoing data updates
Trial Site Locations
Total: 1 location
1
Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, United States, 15224
Actively Recruiting
Research Team
J
Jerome Doerger, BFA, MS, MPH, LCGC
L
Lina Ghaloul Gonzalez, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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