Timing of pulmonary arterial hypertension diagnosis in Brazil
Official title: PANDORA: PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch
Run by University of Sao Paulo General Hospital · NCT06998329 · Data updated 2026-11-12
We will see how long it takes adults with pulmonary arterial hypertension in Brazil to get a confirmed diagnosis and what causes delays.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 139 (estimated) |
| Sponsor | University of Sao Paulo General Hospital Academic / other |
| Locations | 1 site (São Paulo, São Paulo) |
| Status | Recruiting |
| Started | July 7, 2025 |
| Main results expected | July 2027 |
| Study ends | December 2027 |
| Registry record updated | September 30, 2025 |
| Trial ID | NCT06998329 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults in Brazil diagnosed with Group 1 pulmonary arterial hypertension by right heart catheterization who have documented or reliably estimated dates for symptom onset and for confirmed diagnosis are ideal candidates.
✕Probably not a fit
Patients without Group 1 PAH, without right heart catheterization confirmation, without records of symptom onset or diagnosis dates, or pediatric patients are unlikely to be included or directly benefit.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This multicenter observational project will collect medical-record and patient-journey data from Brazilian PAH reference centers to measure time from first symptom to confirmed diagnosis. Eligible adults must have Group 1 PAH confirmed by right heart catheterization and documented or reliably estimated dates for symptom onset and diagnosis. Patients with non–Group 1 pulmonary hypertension, insufficient records, or diagnoses made only by echocardiography will be excluded. Analysis will identify common misdiagnoses, referral patterns, and system or patient factors associated with longer diagnostic delays.
Why it matters
Potential benefit: If successful, the findings could point to specific steps—such as earlier referral pathways or clinician education—that shorten diagnostic delays and improve patient outcomes.
How similar studies have gone: Previous observational studies in Australia and parts of Latin America have documented long diagnostic delays for PAH, so this approach is established though Brazil-specific national data remain limited.
Who can join: the full rules
Show full inclusion / exclusion 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.
Where it's running
-
InCor - Universidade de São Paulo
São Paulo, São Paulo, Brazil Recruiting
Study contacts
- Study coordinator: Caio Fernandes, PhD
- Email: caio.cesar@hc.fm.usp.br
- Phone: +55 11 2661-1548
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Switching endothelin receptor medicines and risk in pulmonary arterial hypertension
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Improving adherence to PAH treatment with telemedicine and patient guidance
This study will try whether regular telemedicine check-ins and guided education help people with PAH stick to their oral medications and manage side effects.
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Rutgers Genetics of Pulmonary Hypertension
This online project will try to see if genetic differences affect the risk of pulmonary hypertension in U.S. adults, and anyone 18 or older can join whether or not they have PH.
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Testing a patient questionnaire about pulmonary hypertension knowledge
This project will test a questionnaire to measure what adults with pulmonary arterial hypertension know about their condition, treatments, and self-care.
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Sotatercept to support right ventricular function in pulmonary arterial hypertension
This research will try sotatercept injections in adults with PAH to see if the medicine helps the right side of the heart work better.
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Sleep problems in PAH patients: how sleep breathing relates to PAH outcomes
This study tests how sleep-disordered breathing and nocturnal oxygen changes relate to outcomes in adults with pulmonary arterial hypertension.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.