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NCT03169010 | RECRUITING | Pulmonary Hypertension

Registration Study for Rare Type of Pulmonary Hypertension
Sponsor:

China National Center for Cardiovascular Diseases

Information provided by (Responsible Party):

Z Hi-Cheng J ing, MD

Brief Summary:

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.

Condition or disease

Pulmonary Hypertension

Intervention/treatment

laboratory biomarker analysis

Genetic analysis

Detailed Description:

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.

Study Type : OBSERVATIONAL
Estimated Enrollment : 2000 participants
Official Title : Registration Study for Rare Type of Pulmonary Hypertension
Actual Study Start Date : 2017-05-06
Estimated Primary Completion Date : 2040-12-31
Estimated Study Completion Date : 2040-12-31

Information not available for Arms and Intervention/treatment

Ages Eligible for Study:
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers: 1
Criteria
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
Registration Study for Rare Type of Pulmonary Hypertension

Location Details

NCT03169010

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How to Participate

Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.

Locations

RECRUITING

China, Beijing

Chinese Academy of Medical Sciences Fuwai Hospital and Peking Union Medical College Hospital

Beijing, Beijing, China, 100037