Identifying genetic factors for pulmonary arterial hypertension in congenital heart defects

Prospective, Monocentric Pilot Study for the Identification of Known or Novel Genes Associated With Development of Pulmonary Arterial Hypertension in Patients With Congenital Shunt Lesions

Not applicable Interventional Universitaire Ziekenhuizen KU Leuven · NCT02691689

This study is trying to find out if certain gene changes in people with congenital heart defects can lead to pulmonary arterial hypertension, to help catch and treat it earlier.

Quick facts

PhaseNot applicable
Study typeInterventional
Enrollment21 (estimated)
Ages18 Years and up
SexAll
SponsorUniversitaire Ziekenhuizen KU Leuven Academic / other
Locations1 site (Leuven)
Trial IDNCT02691689 on ClinicalTrials.gov

What this trial studies

This study investigates the genetic predisposition to pulmonary arterial hypertension (PAH) in patients with congenital heart defects, specifically those with atrial septal defects (ASD) or ventricular septal defects (VSD). The researchers aim to identify gene mutations that may contribute to the development of PAH, which often occurs in patients with congenital shunt lesions. By conducting genetic testing, the study seeks to uncover the relationship between specific genetic profiles and the severity of PAH, potentially leading to earlier detection and intervention. The ultimate goal is to improve patient outcomes through targeted prevention and treatment strategies.

Who should consider this trial

Good fit: Ideal candidates include individuals diagnosed with secundum atrial septal defect or ventricular septal defect, who have developed PAH.

Not a fit: Patients with other congenital heart diseases, chronic lung diseases, or those with a history of pulmonary embolism may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could enable earlier detection and management of pulmonary arterial hypertension in at-risk patients, improving their quality of life and survival rates.

How similar studies have performed: While genetic links between congenital heart defects and pulmonary arterial hypertension are not extensively studied, emerging evidence suggests potential success in identifying genetic factors in similar contexts.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Previous diagnosis of secundum atrial septal defect (ASD) or ventricular septal defect (VSD), with or without repair
* Development of PAH, defined as mean PAP ≥ 25 mmHg by right heart catheterization, in combination with a pulmonary wedge pressure of ≤ 15 mmHg and a PVR (pulmonary vascular resistance) of \> 3 Wood units
* Preferably, families with congenital shunt lesions (at least three family members affected with ASD or VSD) will be considered for inclusion

Exclusion Criteria:

* Other congenital heart disease
* Mental retardation
* Dysmorphic characteristics
* Chronic lung disease or total lung capacity \< 80% of predicted value
* History of pulmonary embolism

Where this trial is running

Leuven

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Heart Defects, CongenitalPulmonary Arterial HypertensionGenetic Testing
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.