Actively Recruiting
PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch
Led by University of Sao Paulo General Hospital · Updated on 2025-09-30
139
Participants Needed
1
Research Sites
125 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adult patients (18 years or older) diagnosed with PAH (Group 1 PH) or other selected rare diseases
- Availability of documented or estimated date of first symptom suggestive of PAH
- Availability of documented date of confirmed PAH diagnosis
You will not qualify if you...
- Patients with pulmonary hypertension not classified as Group 1 (such as due to left heart disease, chronic lung disease, or chronic thromboembolic disease)
- Patients lacking sufficient data to determine date of symptom onset or date of confirmed diagnosis
- Patients diagnosed only clinically or by echocardiography without confirmation by right heart catheterization
AI-Screening
AI-Powered Screening
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Trial Site Locations
Total: 1 location
1
InCor - Universidade de São Paulo
São Paulo, São Paulo, Brazil, 05048000
Actively Recruiting
Research Team
C
Caio Fernandes, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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