NCT06998329Recruiting
PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch
PANDORA: PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch
Source: ClinicalTrials.gov · Last updated 30 Sept 2025 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 139 (estimated)
- First submitted
- 13 May 2025
- Start date
- 7 Jul 2025
- Primary completion date
- 31 Jul 2027
- Lead sponsor
- University of Sao Paulo General Hospital
- NCT number
- NCT06998329
What you commit to
- Study type: Observational
- Planned participants: 139
- From 7 Jul 2025 to the primary completion date, 31 Jul 2027
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Patients with pulmonary hypertension not classified as Group 1 (e.g., due to left heart disease, chronic lung disease, or chronic thromboembolic disease).
- Patients diagnosed only clinically or by echocardiography, without confirmation by right heart catheterization.
Other
- Patients with insufficient data to determine either the date of symptom onset or the date of confirmed diagnosis.
Who the study is looking for
- Availability of documented or estimated date of first symptom suggestive of PAH.
- Availability of documented date of confirmed PAH diagnosis.
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| InCor - Universidade de São Paulo Coordinator of this site? Confirm its status | São Paulo | Brazil | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.