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A Study to Establish a Registry for the Pulmonary Hypertension Association

Overview

About this study

The objectives of this study are to measure and improve quality of care (including assessing differences in adherence to evidence-based guidelines and establishing benchmarks for health outcomes); determine the clinical effectiveness, comparative effectiveness, and cost effectiveness of treatment approaches; understand risk factors for outcomes and regional/center differences; and facilitate funded clinical trials of new therapies and collaboration with the PAH community at large, including providers, patients, and their caregivers.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • New patients to a PHA Care Center with either newly- diagnosed or established pulmonary arterial hypertensin (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) within 6 months of first outpatient visit at the PHA-Accredited PH Care Centers (PHCC).
  • Informed consent for data to be abstracted and included in the Pulmonary Hypertension Association Registry (PHAR) provided by the patient or guardian.
  • Able to understand and speak either English or Spanish.
  • New patients 18 years or older.

Exclusion Criteria:

  • Inability to meet any of the above inclusion criteria.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Jacksonville, Fla.

Mayo Clinic principal investigator

Charles Burger, M.D.

Open for enrollment

Contact information:

Inna Dawson CCRP

(904)953-3855

Abrea.Inna@mayo.edu

More information

Publications

Publications are currently not available

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CLS-20467895

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