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Pulmonary arterial hypertension associated with congenital heart disease

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Disease definition

Pulmonary arterial hypertension associated with congenital heart disease (PAH-CHD) is a form of pulmonary arterial hypertension (PAH), characterized by elevated pulmonary arterial resistance leading to right heart failure occurring as a common complication of congenital heart malformations with left to right cardiac shunts. Eisenmenger syndrome is the most advanced form of PAH-CHD and is defined as the complete or partial reversal of an initial left-to-right shunt to a right-to-left shunt, causing cyanosis and limited exercise capacity. PAH-CHD also includes mild to moderate systemic-to-pulmonary shunts with no cyanosis at rest, patients with small defects, and those with residual PAH following corrective cardiac surgery.

ORPHA:275803

Classification level: Group of disorders

Synonym(s):
  • PAH associated with congenital heart disease

Prevalence: 1-9 / 1 000 000

Inheritance: Not applicable

Age of onset: All ages

UMLS: C3697119

A summary on this disease is available in Español, Nederlands
Detailed information

Logo ERN: produced/endorsed by ERN(s) Logo FSMR: produced/endorsed by FSMR(s)

General public
Guidelines
Emergency guidelines
Français (2020.pdf) - Orphanet Urgences
Clinical practice guidelines
English (2016) - Eur Heart J Logo ERN
English (2023) - Eur J Heart Fail Logo ERN
English (2022) - Eur Heart J Logo ERN
English (2011) - Int J Cardiol Logo ERN
Disease review articles
Review article
English (2013) - Orphanet J Rare Dis
Patient-Centered Outcome Measures (PCOMs)
Access questionnaires assessing quality of life in this disease (English)
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