Registration Study for Rare Type of Pulmonary Hypertension

  • End date
    Dec 31, 2040
  • participants needed
  • sponsor
    China National Center for Cardiovascular Diseases
Updated on 4 October 2022
heart disease
pulmonary disease
pulmonary arterial hypertension
right heart catheterization
Accepts healthy volunteers


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.


The main research contents of this registration study includes:

  1. Build a baseline database of the rare type of pulmonary hypertension. Collect general information, on-set symptoms and time, laboratory examination, imaging results, right heart catheterization and treatment information.
  2. Follow up recruited patients at regular intervals(6m~1y). Collect information on change in patients condition, laboratory test and treatment.
  3. Conduct genetic testing for gene mutation related or hereditary pulmonary hypertension. Link the clinical database to genetic database.
  4. Establish bio-bank for serum/plasma, urine, stool, tissues or cells.
  5. Establish prognostic study based on the clinical follow-up and genetic database.
  6. Draw diagnostic and treatment algorithm for the rare type of pulmonary hypertension.

Controls subjects: blood sample and medical data collected once.

Condition Pulmonary Hypertension
Treatment laboratory biomarker analysis, Genetic Analysis
Clinical Study IdentifierNCT03169010
SponsorChina National Center for Cardiovascular Diseases
Last Modified on4 October 2022


Yes No Not Sure

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
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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