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Observational Study of Heterotaxy and Congenital Heart Defects

This study aims to better understand the genetic causes of heterotaxy syndrome (a rare birth defect affecting the heart and other organs) and related congenital heart defects (heart problems present at birth). Researchers will collect medical information and genetic samples from individuals with these conditions and their family members. The goal is to clarify the molecular genetics of these disorders, which could help with future genetic counseling and understanding how the body develops normally and abnormally. The study is currently observational, meaning it focuses on collecting information rather than testing a specific treatment. The researchers hope to gather information from up to 2000 participants over 8 years. The current recruitment status is unclear.

Study design
This is an observational study aiming to enroll up to 2000 participants. It focuses on collecting information rather than testing a specific intervention.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoint, clarifying molecular genetics, will be measured at 8 years.

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NCT02432079

Molecular Genetics of Heterotaxy and Related Congenital Heart Defects

Recruiting
Not specifiedAll AgesObservational
Indiana University
~2,000 participants
Updated 2026-06-22 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Clarify Molecular Genetics of Heterotaxy and Related Congenital Heart Defects
Measured over 8 years

Conditions

Heterotaxy Syndrome
Congenital Heart Defects

Explore related trials

Heart MalformationHeterotaxy Syndrome

Where it's being run

1 sites across 1 states
Indiana1

Study leadership

  • Stephanie M. Ware, MD, PhD · PRINCIPAL_INVESTIGATOR · Indiana University

Who to contact

Sarah K. Murphy, MPH
[email protected]
317-278-3026
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Eligibility criteria

Inclusion

Subjects with heterotaxy and related congenital heart defects
Family members of subjects with heterotaxy and related congenital heart defects

Exclusion

Subjects without heterotaxy and related congenital heart defects
Family members of subjects without heterotaxy and related congenital heart defects

What this trial measures

  • Clarify Molecular Genetics of Heterotaxy and Related Congenital Heart Defects8 years

    These results will provide important information on the causes, management, and prognosis of heterotaxy and related congenital heart defects. This will provide the basis for future genetic testing and genetic counseling as well as contribute to knowledge about the biology of normal and abnormal development of left-right asymmetry.