PANDORA: PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
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
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• Availability of documented or estimated date of first symptom suggestive of PAH.

• Availability of documented date of confirmed PAH diagnosis.

Locations
Other Locations
Brazil
InCor - Universidade de São Paulo
RECRUITING
São Paulo
Contact Information
Primary
Caio Fernandes, PhD
caio.cesar@hc.fm.usp.br
+55 11 2661-1548
Time Frame
Start Date: 2025-07-07
Estimated Completion Date: 2027-12
Participants
Target number of participants: 139
Treatments
Patients with Pulmonary Arterial Hypertension
This group includes adult patients diagnosed with Group 1 pulmonary arterial hypertension (PAH), according to international hemodynamic criteria confirmed by right heart catheterization. All patients were diagnosed within the past five years and are followed at participating reference centers in Brazil. This is a non-interventional, observational study based on retrospective and/or prospective data from medical records. No treatment or diagnostic procedure will be administered as part of the study.
Related Therapeutic Areas
Sponsors
Leads: University of Sao Paulo General Hospital

This content was sourced from clinicaltrials.gov