Disease Directory Hereditary Pulmonary Arterial Hypertension
Respiratory

Hereditary Pulmonary Arterial Hypertension

Also known as: heritable PAH, BMPR2-related PAH, familial pulmonary arterial hypertension

Prevalence

Approximately 1–2 per million; BMPR2 mutations in ~70–80% of heritable cases

Onset

Variable; childhood to adult

Type

Rare vascular lung disease

Gene

BMPR2, ACVRL1, ENG

About Hereditary Pulmonary Arterial Hypertension

Hereditary pulmonary arterial hypertension is a rare, life-threatening condition caused by autosomal dominant mutations, most commonly in BMPR2, leading to progressive obliterative remodelling of small pulmonary arteries and right heart failure. Penetrance is incomplete (approximately 20%), and the disease shows variable expressivity, making genetic family screening essential. Despite advances in targeted therapies addressing the prostacyclin, endothelin, and nitric oxide pathways, there is no cure and prognosis remains guarded without transplantation.

Common Clinical Features

Progressive dyspnoea on exertion Fatigue Syncope or pre-syncope Right heart failure (peripheral oedema, ascites) Chest pain Haemoptysis Elevated mean pulmonary arterial pressure on right heart catheterisation

Clinical Trial Eligibility Tips

What to know before applying to Hereditary Pulmonary Arterial Hypertension trials.

Right heart catheterisation confirming mPAP ≥25 mmHg at rest with PAWP ≤15 mmHg is the diagnostic gold standard required for most PAH trials; ensure this is on file.

Genetic mutation status (particularly BMPR2) is increasingly used as a stratification variable; obtain formal genetic testing before applying.

Baseline 6-minute walk distance and WHO functional class are near-universal eligibility and stratification criteria; obtain these measurements close to the trial screening date.

Patient Resources

Patient Organization

Pulmonary Hypertension Association

Visit website ↗

Natural History Registry

PHAR Registry (Pulmonary Hypertension Association Registry)

Join registry ↗

Orphanet

European reference resource for rare diseases (ORPHA:422)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

Search NORD ↗

Find recruiting Hereditary Pulmonary Arterial Hypertension trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Hereditary Pulmonary Arterial Hypertension. Updated daily.

Related Rare Diseases