Registry for a rare type of pulmonary hypertension
Registration Study for Rare Type of Pulmonary Hypertension
This study is setting up a national registry to collect information about people with a rare type of pulmonary hypertension to better understand the condition and its causes.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 2000 (estimated) |
| Sex | All |
| Sponsor | China National Center for Cardiovascular Diseases Government |
| Locations | 1 site (Beijing, Beijing Municipality) |
| Trial ID | NCT03169010 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include patients diagnosed with various forms of rare pulmonary artery hypertension who have undergone right heart catheterization.
Not a fit: Patients not suffering from the rare type of pulmonary artery hypertension will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of rare pulmonary hypertension and improve diagnostic and treatment strategies for affected patients.
How similar studies have performed: Other studies have shown success in establishing registries for rare diseases, suggesting that this approach could yield valuable insights.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Beijing, Beijing Municipality
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.