Registry and biorepository for pulmonary hypertension patients
Official title: Pulmonary Hypertension Biorepository and Registry
Run by University of Kansas Medical Center · NCT04808596 · Data updated 2026-11-12
This study is setting up a collection of health information and blood samples from people with pulmonary hypertension to help researchers learn more about the disease and improve treatments.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 300 (estimated) |
| Sponsor | University of Kansas Medical Center Academic / other |
| Locations | 1 site (Kansas City, Kansas) |
| Status | Recruiting |
| Started | August 10, 2020 |
| Main results expected | December 31, 2026 |
| Study ends | July 31, 2027 |
| Registry record updated | August 1, 2025 |
| Trial ID | NCT04808596 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are adults aged 18 and older with a confirmed diagnosis of pulmonary hypertension.
✕Probably not a fit
Patients who decline to participate or are unable to provide informed consent will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This project aims to establish a comprehensive registry and biorepository of blood samples from patients diagnosed with pulmonary hypertension across various classifications. It will include both retrospective and prospective data collection to enhance understanding of the disease's cellular mechanisms and mediators. The collected samples will be utilized for future research, potentially leading to advancements in treatment options for pulmonary hypertension. The study will involve patients from the University of Kansas Medical Center.
Why it matters
Potential benefit: If successful, this initiative could significantly improve the understanding and treatment of pulmonary hypertension.
How similar studies have gone: While this approach is not novel, similar studies have successfully established registries and biorepositories that have contributed to advancements in understanding various diseases.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. The participant is a patient at TUKHS or has agreed to participate in a study approved by the KUMC Human Research Protection Program (HRPP) 2. The participant has a diagnosis of pulmonary hypertension confirmed by right heart catheterization 3. Patient is ≥ 18 years of age or older Exclusion Criteria: 1. Participant declines to participate (living patients only) 2. Participant is unable to provide informed consent (living patients only)
Where it's running
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University of Kansas Medical Center
Kansas City, Kansas, United States Recruiting
Study contacts
- Principal investigator: Leslie A Spikes, MD — Assistant Professor of Medicine
- Study coordinator: Luigi R Boccardi, Ed.D., MPH
- Email: lboccardi@kumc.edu
- Phone: 9135884022
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Registry for patients with pulmonary hypertension
This study collects information from people with pulmonary hypertension to see how they are diagnosed and treated, and to find ways to improve their care.
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Rutgers Genetics of Pulmonary Hypertension
This online project will try to see if genetic differences affect the risk of pulmonary hypertension in U.S. adults, and anyone 18 or older can join whether or not they have PH.
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Quality control of right heart catheterization for pulmonary vascular diseases in China
This study looks at the quality of right heart catheterization procedures for people with suspected pulmonary hypertension in China to see how well they are being done and what outcomes patients experience.
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Registry for patients with pulmonary hypertension linked to interstitial lung disease
This study is collecting information from patients with pulmonary hypertension linked to interstitial lung disease to see how different treatments affect their health over time.
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129Xe MRI to monitor sotatercept treatment in pulmonary arterial hypertension
This will test whether hyperpolarized 129Xe MRI scans can noninvasively track lung blood-vessel improvement in adults with pulmonary arterial hypertension treated with sotatercept.
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Using artificial intelligence to evaluate pulmonary hypertension
This study is testing if using artificial intelligence with different medical tests can help doctors find pulmonary hypertension earlier and more accurately in patients.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.