PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch

Condition(s) studied

Investigational drug(s) / intervention(s)

There will be no intervention: There will be no intervention

Study summary

Understanding Delays in the Diagnosis of Pulmonary Arterial Hypertension and Rare Diseases in Brazil: A Multicenter Observational Study

\--- Pulmonary arterial hypertension (PAH) is a rare, progressive, and life-threatening disease that affects the arteries of the lungs and the right side of the heart. Early diagnosis is essential to initiate appropriate treatment and improve patient outcomes. However, worldwide studies show that there is often a significant delay between the onset of symptoms and the final diagnosis. This delay may lead to disease progression and worse survival.

This multicenter observational study aims to understand the time from the first symptoms to the diagnosis of PAH and other rare diseases across several Brazilian reference centers. By analyzing medical records and patient journeys, the investigators intends to identify factors contributing to delayed diagnosis and potential opportunities for earlier detection.

The study includes adult patients diagnosed with PAH or other selected rare diseases within the last five years. The investigators will analyze time to diagnosis, number and type of physicians consulted, tests performed, and possible misdiagnoses. Our goal is to support the development of strategies that reduce diagnostic delay and improve access to specialized care for people living with rare diseases.

This study does not involve any intervention and poses no additional risk to participants, as it is based solely on retrospective data from medical records.

Eligibility

Primary outcome measure(s)

• Time from Symptom Onset to Confirmed Diagnosis of Group 1 Pulmonary Arterial Hypertension — From date of first reported symptom potentially related to PAH until the date of confirmed diagnosis by right heart catheterization, assessed up to 60 months.
  This outcome measures the time interval (in months) between the patient's first reported symptom potentially related to pulmonary arterial hypertension and the date of confirmed diagnosis by right heart catheterization. Data will be collected through retrospective review of medical records and/or prospectively documented clinical follow-up.

Trial sites (1)

More University of Sao Paulo General Hospital trials in Brazil

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