Timing of pulmonary arterial hypertension diagnosis in Brazil
PANDORA: PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch
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 |
|---|---|
| Enrollment | 139 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University of Sao Paulo General Hospital Academic / other |
| Locations | 1 site (São Paulo, São Paulo) |
| Trial ID | NCT06998329 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: 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.
Eligibility criteria
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 this trial is running
São Paulo, São Paulo
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.