Recruiting

Registration Study for Rare Type of Pulmonary Hypertension

The knowledge on the rare type of pulmonary hypertension which can not be explained by left heart disease, respiratory disease or congenital heart disease is very limited. Investigators aim to setup a national registration study for the rare type of pulmonary hypertension, to understand the natural history, survival, progression, genetic and environmental contributions to disease.

ClinicalTrials.gov IDNCT03169010

PhaseNot Applicable

Enrollment2000

SponsorChina National Center for Cardiovascular Diseases

AgeNo minimum reported

SexALL

I'm interested View official listing

Conditions studied

Pulmonary Hypertension

About this study

Interventions

Other: laboratory biomarker analysis — Laboratory results will be analysed to identify disease related biomarkers.
Genetic: Genetic analysis — Gene sequencing results will be analysed to identify disease related mutations.

Primary outcomes

Survival Rate of Participants (up to 10 years, at 12 months interval)
Lung transplantation (up to 10 years, at 12 months interval)
Change in New York Heart Association (NYHA) functional class (up to 10 years, at 3 months interval)
Change in 6 mint walk distance (up to 10 years, at 3 months interval)

Eligibility information

Inclusion Criteria: * Participant is willing and able to give informed consent for participation in the study. * Patients diagnosed as idiopathic pulmonary artery hypertension, hereditary pulmonary artery hypertension, hereditary hemorrhagic telangiectasia associated pulmonary artery hypertension, pulmonary veno-occlusive disease, pulmonary capillary hemangiomatosis associated pulmonary artery hypertension, cavernous transformation of portal vein associated pulmonary artery hypertension, special type of congenital heart disease associated pulmonary artery hypertension, chronic thromboembolism pulmonary hypertension. * All patients should have undergone right heart catheterization, diagnosed according to the guideline. Exclusion Criteria: The participant may not enter the study if ANY of the following apply: * Patients unwilling or unable to provide written consent for participation in the study. * Not suffering from the rare type of pulmonary artery hypertension; Inclusion criteria-Controls * Participant is willing and able to give informed consent for participation in the study. * Self-reported to be healthy

Study locations

Chinese Academy of Medical Sciences Fuwai Hospital and Peking Union Medical College Hospital, Beijing, Beijing Municipality 100037 China

Before you participate: Varda Clinical is an independent discovery tool, not the study sponsor or a medical provider. Eligibility can only be determined by the official study team. Discuss potential risks and benefits with a qualified healthcare professional.

Source: ClinicalTrials.gov. Record last refreshed by Varda Clinical: 2026-09-27.