PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch

Launched by UNIVERSITY OF SAO PAULO GENERAL HOSPITAL · May 21, 2025

Keywords

ClinConnect Summary

This clinical trial is studying Pulmonary Arterial Hypertension (PAH), a serious disease that affects the blood vessels in the lungs and can lead to heart problems. The main goal of the study is to understand how long it takes for patients to get a diagnosis after they first notice symptoms. Delays in diagnosis can make the disease worse and affect survival rates, so the researchers want to find out what causes these delays and how to help patients get diagnosed more quickly. They will look at medical records from several centers in Brazil to see how long it takes for patients to see doctors, the tests they undergo, and any misdiagnoses that may occur.

To participate in this study, individuals need to be adults who have been diagnosed with PAH or other rare diseases within the last five years. They must have a documented date of when their symptoms started and when they were officially diagnosed. Importantly, this study does not involve any treatments or risks for the participants since it is based on reviewing past medical records. The insights gained from this research could lead to better support and quicker care for those living with rare diseases.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Availability of documented or estimated date of first symptom suggestive of PAH.
• • Availability of documented date of confirmed PAH diagnosis.
• Exclusion Criteria:
• • Patients with pulmonary hypertension not classified as Group 1 (e.g., due to left heart disease, chronic lung disease, or chronic thromboembolic disease).
• • Patients with insufficient data to determine either the date of symptom onset or the date of confirmed diagnosis.
• • Patients diagnosed only clinically or by echocardiography, without confirmation by right heart catheterization.