Registration Study for Rare Type of Pulmonary Hypertension
NCT ID: NCT03169010
Last Updated: 2023-10-02
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
2000 participants
OBSERVATIONAL
2017-05-06
2040-12-31
Brief Summary
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Detailed Description
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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.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Idiopathic Pulmonary Artery Hypertension
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to idiopathic pulmonary artery hypertension (PAH).
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Hereditary PAH
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to hereditary PAH.
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Hereditary Hemorrhagic Telangiectasia
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to hereditary hemorrhagic telangiectasia associated PAH.
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Pulmonary Veno-Occlusive Disease (PVOD)
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to PVOD.
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Pulmonary Capillary Hemangiomatosis
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to pulmonary capillary hemangiomatosis associated PAH
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Cavernous Transformation of Portal Vein
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to cavernous transformation of portal vein associated PAH
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
CTEPH
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to chronic thromboembolism pulmonary hypertension (CTEPH).
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Pulmonary Takaysu Arteritis
Investigators will conduct laboratory biomarker analysis and genetic analysis to identify pathogenesis or factors related to Pulmonary Takaysu Arteritis.
laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Interventions
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laboratory biomarker analysis
Laboratory results will be analysed to identify disease related biomarkers.
Genetic analysis
Gene sequencing results will be analysed to identify disease related mutations.
Eligibility Criteria
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Inclusion Criteria
* 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.
* Participant is willing and able to give informed consent for participation in the study.
* Self-reported to be healthy
Exclusion Criteria
* Patients unwilling or unable to provide written consent for participation in the study.
* Not suffering from the rare type of pulmonary artery hypertension;
ALL
Yes
Sponsors
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Peking Union Medical College Hospital
OTHER
China National Center for Cardiovascular Diseases
OTHER_GOV
Responsible Party
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Zhi-Cheng JING, MD
Director of Thrombosis and Hemostasis Center of Chinese Academy of Medical Sciences Fuwai Hospital
Principal Investigators
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Zhi-Cheng JING, MD. PhD.
Role: PRINCIPAL_INVESTIGATOR
Chinese Academy of Medical Sciences, Fuwai Hospital
Locations
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Chinese Academy of Medical Sciences Fuwai Hospital and Peking Union Medical College Hospital
Beijing, Beijing Municipality, China
Countries
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Central Contacts
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Facility Contacts
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References
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Galie N, Corris PA, Frost A, Girgis RE, Granton J, Jing ZC, Klepetko W, McGoon MD, McLaughlin VV, Preston IR, Rubin LJ, Sandoval J, Seeger W, Keogh A. Updated treatment algorithm of pulmonary arterial hypertension. J Am Coll Cardiol. 2013 Dec 24;62(25 Suppl):D60-72. doi: 10.1016/j.jacc.2013.10.031.
Simonneau G, Robbins IM, Beghetti M, Channick RN, Delcroix M, Denton CP, Elliott CG, Gaine SP, Gladwin MT, Jing ZC, Krowka MJ, Langleben D, Nakanishi N, Souza R. Updated clinical classification of pulmonary hypertension. J Am Coll Cardiol. 2009 Jun 30;54(1 Suppl):S43-S54. doi: 10.1016/j.jacc.2009.04.012.
Other Identifiers
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RarePH135
Identifier Type: -
Identifier Source: org_study_id
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