Amish/Mennonite Research Contact Registry

NCT02990572 | Recruiting

• 1 other identifier: STUDY20050302
• Study Type: observational
• Target: 1,000
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of this registry is to find members of the Plain Community who are interested in participating in future medical research studies. Having a registry makes it easier to contact and offer study participation to individuals who are appropriate for a new research study based on their own and their family medical history. Studies will focus on increasing knowledge about disorders affecting those who are Amish and Mennonite.

Conditions

All

Keywords

Amish; Mennonite

Outcome Measures

Primary Outcomes (1)

• Accumulation and clinical definition of a patient population who are willing to participate in future research studies for which they are eligible.

  This research registry is intended to allow for identification of patients from the Plain Communities who are willing to participate in medical research. Eligibility for each future study will likely cary and patients will be selected and contacted with their permission, by dint of having consented to this registry, about the option of participating in a new research study.

  This registry is intended to be an ongoing resource for recruitment into future research studies and will be maintained up to 14 years.

Study Arms (1)

Amish and Mennonite

* Agree to allow access to past, current, and future medical records * Provide a detailed family health history * Provide contact information that may be used for future approach regarding research studies

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Amish and Mennonite

You may qualify if:

• Amish and Mennonite men and women age 18 or older
• Amish and Mennonite children with the permission of a parent

You may not qualify if:

• Amish and Mennonite men and woman age 18 or older who do not speak English
• Those who are not Amish or Mennonite

Sponsors & Collaborators

• University of Pittsburgh: lead

Study Sites (1)

Children's Hospital of Pittsburgh

Pittsburgh, Pennsylvania, 15224, United States

RECRUITING

MeSH Terms

Conditions

Precursor Cell Lymphoblastic Leukemia-Lymphoma

Condition Hierarchy (Ancestors)

Leukemia, Lymphoid; Leukemia; Neoplasms by Histologic Type; Neoplasms; Hematologic Diseases; Hemic and Lymphatic Diseases; Lymphoproliferative Disorders; Lymphatic Diseases; Immunoproliferative Disorders; Immune System Diseases

Study Officials

• Lina Ghaloul Gonzalez, MD

  University of Pittsburgh

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Jerome Doerger, BFA, MS, MPH, LCGC

CONTACT

412-692-7349; doergerj@upmc.edu

Lina Ghaloul Gonzalez, MD

CONTACT

lina.gonzalez@chp.edu

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Target Duration: 100 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor, Medical Genetics, University of Pittsburgh School of Medicine

Study Record Dates

• First Submitted: November 30, 2016
• First Posted: December 13, 2016
• Study Start: October 1, 2016
• Primary Completion (Estimated): December 1, 2026
• Study Completion (Estimated): December 1, 2030
• Last Updated: January 29, 2026

Record last verified: 2026-01

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)