Genetic Disorder Studies in Amish and Mennonite Communities
This study observes and maintains a genetic database to trace family connections and common ancestors in the Amish and Mennonite communities.
Data Collection
Congenital, Hereditary, and Neonatal Diseases and Abnormalities+3
+ Pathologic Processes
+ Pathological Conditions, Signs and Symptoms
Cohort
Tracking disease incidence in order to identify risk factors and understand disease progression over time.Summary
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.
Protocol
This section provides details of the study plan, including how the study is designed and what the study is measuring.157 patients to be enrolled
Total number of participants that the clinical trial aims to recruit.Cohort
Eligibility
Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.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
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
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
National Institutes of Health Clinical Center
Bethesda, United StatesOpen National Institutes of Health Clinical Center in Google MapsClinic for Special Children
Strasburg, United States