Registry for a rare type of pulmonary hypertension

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to establish a national registry for a rare type of pulmonary hypertension that cannot be attributed to left heart disease, respiratory disease, or congenital heart disease. Researchers will collect comprehensive data on patient demographics, symptoms, laboratory tests, imaging results, and treatment history. Participants will be followed up regularly to monitor changes in their condition, and genetic testing will be conducted to identify mutations associated with the disease. Additionally, a biobank will be created to store biological samples for future research.

Why it matters

Who can join: the full rules

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

Where it's running

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

Study contacts

• Principal investigator: Zhi-Cheng JING, MD. PhD. — Chinese Academy of Medical Sciences, Fuwai Hospital
• Study coordinator: Xi-Qi XU, MD. PhD.
• Email: xuxiqi0928@163.com
• Phone: +861088322267

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.