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Scientists hunt for disease genes in amish and mennonite communities

NCT ID NCT00359580

Knowledge-focused Sponsor: National Human Genome Research Institute (NHGRI) Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This completed study looked at inherited disorders common in Amish and Mennonite populations. Researchers collected medical histories, blood or cheek swab samples from 157 participants to find the genes behind these conditions. They also built a computer database of family trees to help with future genetic research. The goal was to better understand and eventually improve diagnosis and care for these rare disorders.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this research could improve diagnosis and medical care for rare genetic disorders in these communities.
What could go wrong
This is an observational study, not a treatment trial. It may not directly lead to new therapies, and findings may not apply to the general population.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

157 people

The number who actually took part.

Started

Feb 2004

Finished

Jul 2014

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* 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.

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Conditions

The condition(s) this trial relates to.

cartilage-hair hypoplasia Ellis-van Creveld syndrome hereditary disease Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Genetic disease

Contacts and locations

Locations

  • Clinic for Special Children

    Strasburg, Pennsylvania, 17579, United States

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

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