NCT03169010

Registration Study for Rare Type of Pulmonary Hypertension

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 2,000 (estimated)
• Sponsor: China National Center for Cardiovascular Diseases · Other Government
• Sex: All
• Age: —
• Healthy volunteers: Accepted

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.

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.

Conditions

• Pulmonary Hypertension

Interventions

Type	Name	Description
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.

Timeline

• Start date: 2017-05-06
• Primary completion: 2040-12-31
• Completion: 2040-12-31
• First posted: 2017-05-30
• Last updated: 2023-10-02

Locations

1 site across 1 country: China