Completed

Genetic Disorder Studies in Amish and Mennonite Communities

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Study Aim

This study observes and maintains a genetic database to trace family connections and common ancestors in the Amish and Mennonite communities.

What is being collected

Data Collection

Who is being recruted

Congenital, Hereditary, and Neonatal Diseases and Abnormalities+3

+ Pathologic Processes

+ Pathological Conditions, Signs and Symptoms

Over 18 Years
See all eligibility criteria
How is the trial designed

Cohort

Tracking disease incidence in order to identify risk factors and understand disease progression over time.
Observational
Study Start: February 2004
See protocol details

Summary

Principal SponsorNational Human Genome Research Institute (NHGRI)
Last updated: March 25, 2026
Sourced from a government-validated database.Claim as a partner

Study start date: February 10, 2004

Actual date on which the first participant was enrolled.

This study focuses on understanding genetic diseases within the Amish and Mennonite communities. These groups are ideal for genetic research because they have a higher occurrence of certain inherited conditions due to their close-knit family structures. With detailed family histories and a larger average family size, researchers have a unique opportunity to study these genetic disorders. This research aims to uncover more about these conditions, which can be rare or even unknown in other populations, potentially leading to better understanding and management of these diseases. Participants will not undergo any specific treatment, as this is an observational study. Instead, researchers will analyze genealogical records and genetic data to learn more about the diseases present in these communities. The study's goal is to maintain and expand a computerized database of Anabaptist genealogies. This database will help in tracking family histories and identifying common ancestors, which is crucial for understanding how these genetic conditions are passed down through generations. By doing so, the study aims to improve the methods for diagnosing and eventually managing these genetic diseases.

Official TitleGenetic Studies in the Amish and Mennonites
NCT00359580
Principal SponsorNational Human Genome Research Institute (NHGRI)
Last updated: March 25, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details

157 patients to be enrolled

Total number of participants that the clinical trial aims to recruit.

Cohort

These studies follow a group of individuals with common characteristics (such as a condition or birth year) over a specific period to study health outcomes or exposures.

Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria

Any sex

Biological sex of participants that are eligible to enroll.

Over 18 Years

Range of ages for which participants are eligible to join.

Healthy volunteers not allowed

If individuals who are healthy and do not have the condition being studied can participate.

Conditions

Pathology

Congenital, Hereditary, and Neonatal Diseases and AbnormalitiesPathologic ProcessesPathological Conditions, Signs and SymptomsDisease AttributesGenetic Diseases, InbornRare Diseases

Criteria

* INCLUSION CRITERIA: Subjects are divided into two groups: Group A: Patients and their families with known or suspected Mendelian or complex traits, who will be enrolled in the molecular genetics and phenotypic characterization study. Informed consent will be obtained from each of these subjects. Group B: Those individuals who are listed in the Fisher Family History and multiple other genealogy books will be included in the AGD database.

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Study Objectives

Study Objectives

Primary Objectives

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.

This study has 2 locations

Suspended

National Institutes of Health Clinical Center

Bethesda, United StatesOpen National Institutes of Health Clinical Center in Google Maps
Suspended

Clinic for Special Children

Strasburg, United States
Completed2 Study Centers