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NCT Number: NCT04808596

Pulmonary Hypertension Biorepository and Registry

Establish a pulmonary hypertension registry and biorepository to lead towards a further understanding of the disease.

Recruiting

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Key information

Conditions

Pulmonary Hypertension Cardiovascular Diseases Chronic Thromboembolic Pulmonary Hypertension Familial Primary Pulmonary Hypertension Hypertension Hypertension, Pulmonary Hypoxia Lipodystrophy, Congenital Generalized, Type 3 Lung Diseases Pathological Conditions, Signs and Symptoms Pulmonary Arterial Hypertension Pulmonary Hypertension Due to Left Heart Disease Pulmonary Hypertension Due to Lung Diseases and Hypoxia Pulmonary Hypertension, Primary Pulmonary Hypertension, Primary, 2 Pulmonary Hypertension, Primary, 3 Pulmonary Hypertension, Primary, 4 Respiratory Tract Diseases Signs and Symptoms Signs and Symptoms, Respiratory Vascular Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

University of Kansas Medical Center

Kansas City, Kansas, 66160, United States

Location status: Recruiting

Location contact

Kimberly Cygan, MBA, BSN, RN

CONTACT

[email protected]

Leslie A Spikes, MD

PRINCIPAL_INVESTIGATOR

Lewis G Satterwhite, MD

SUB_INVESTIGATOR

Luigi R Boccardi, Ed.D., MPH

CONTACT

[email protected]

9135884022

Timothy L Williamson, MD, FCCP

SUB_INVESTIGATOR

About this study

The aim of this project will be to establish a broad and wide-ranging registry and biorepository of blood samples from patients with pulmonary hypertension, including all WHO groups I-V to be used for future research in these areas. This will be both a retrospective and prospective project. The registry and biorepository will be utilized to study and grow our knowledge of the cellular mechanisms and mediators of the disease and, in turn, contribute to advancements in treatment.

Who can participate

Only the study team can determine whether someone qualifies for participation.

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)

Treatment and study plan

Primary outcomes

  1. 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.

  2. Establish a Biorepository

    Time frame: From Enrollment to 6 Months

    Establish a collection of biospecimens from patients with pulmonary hypertension.

  3. Biospecimens Collection

    Time frame: From Enrollment to 12 Months

    Correlate biospecimens to longitudinally collected individual patient data.

  4. Collaborate

    Time frame: From Enrollment to 24 Months

    Provide biospecimens to researchers investigating pulmonary hypertension. Separate IRB approval will be needed for these studies.

Study contacts

Contact information is provided by the study sponsor or research team.

Kimberly Cygan, MBA, BSN, RN

CONTACT

[email protected]

Luigi R Boccardi, Ed.D., MPH

CONTACT

[email protected]

9135884022

Sponsors and collaborators

Lead sponsor

University of Kansas Medical Center

Other

Registry information

Acronym: PHBR

Important dates

Study start
2020
Primary completion
2026
Study completion
2027
First posted
Mar 22, 2021
Registry last updated
Aug 1, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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