NCT04808596 · University of Kansas Medical Center
Pulmonary Hypertension Biorepository and Registry
(PHBR)
What this study is about
Establish a pulmonary hypertension registry and biorepository to lead towards a further understanding of the disease.
View original scientific description
Establish a pulmonary hypertension registry and biorepository to lead towards a further understanding of the disease.
Primary outcome measures
Collect Clinical Data
Time frame: From Enrollment to 6 Months
Collect clinically obtained data from current and deceased patients with pulmonary hypertension to support research.
Establish a Biorepository
Time frame: From Enrollment to 6 Months
Establish a collection of biospecimens from patients with pulmonary hypertension.
Biospecimens Collection
Time frame: From Enrollment to 12 Months
Correlate biospecimens to longitudinally collected individual patient data.
Collaborate
Time frame: From Enrollment to 24 Months
Provide biospecimens to researchers investigating pulmonary hypertension. Separate IRB approval will be needed for these studies.
Who can participate
This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.
Inclusion criteria
- The participant is a patient at TUKHS or has agreed to participate in a study approved by the KUMC Human Research Protection Program (HRPP)
- The participant has a diagnosis of pulmonary hypertension confirmed by right heart catheterization
- Patient is ≥ 18 years of age or older
Exclusion criteria
- Participant declines to participate (living patients only)
- Participant is unable to provide informed consent (living patients only)
Where
- Kansas City, Kansas
Related conditions & keywords
Frequently asked questions
What is a clinical trial?
A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.
Is it safe to participate?
Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.
Will I be compensated?
Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.
Will I receive a placebo instead of treatment?
When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.
Can I leave a trial if I change my mind?
Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.
How long does a clinical trial last?
Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.
Data: ClinicalTrials.gov · synced Aug 1, 2025 · Source of record for eligibility and locations