[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100592814":3},{"organization":4,"armGroups":7,"interventions":14,"overallOfficials":10,"centralContacts":18,"locations":24,"responsibleParty":42,"collaborators":10,"id":46,"slug":47,"hasResults":48,"nctId":49,"briefTitle":50,"officialTitle":51,"acronym":52,"eligibilityCriteria":53,"healthyVolunteers":48,"sex":54,"minAge":55,"maxAge":10,"enrollmentInfo":56,"targetDuration":10,"studyType":59,"phases":10,"briefSummary":60,"conditions":61,"keywords":65,"overallStatus":27,"whyStopped":10,"lastUpdateSubmitDate":73,"lastUpdatePostDateStruct":74,"startDateStruct":77,"completionDateStruct":79,"leadSponsor":81,"locationsCount":82},{"fullName":5,"class":6},"University of Sao Paulo General Hospital","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Patients with Pulmonary Arterial Hypertension",null,"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\u002For prospective data from medical records. No treatment or diagnostic procedure will be administered as part of the study.",[13],"Other: There will be no intervention",[15],{"type":6,"name":16,"description":16,"armGroupLabels":17,"otherNames":10},"There will be no intervention",[9],[19],{"name":20,"role":21,"phone":22,"phoneExt":10,"email":23},"Caio Fernandes, PhD","CONTACT","+55 11 2661-1548","caio.cesar@hc.fm.usp.br",[25],{"facility":26,"status":27,"city":28,"state":28,"zip":29,"country":30,"countryCode":31,"cosmosGeoPoint":32,"geoPoint":37,"contacts":38},"InCor - Universidade de São Paulo","RECRUITING","São Paulo","05048000","Brazil","BR",{"type":33,"coordinates":34},"Point",[35,36],-46.63611,-23.5475,{"lat":36,"lon":35},[39],{"name":40,"role":21,"phone":41,"phoneExt":10,"email":23},"Caio Fernandes","PhD",{"type":43,"investigatorFullName":44,"investigatorTitle":45,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"PRINCIPAL_INVESTIGATOR","Caio Júlio César dos Santos Fernandes","Principal Investigator","100592814","pulmonary-hypertension-diagnosis-a-national-cohort-research-100592814",false,"NCT06998329","PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch","PANDORA: PulmonAry hyperteNsion DiagnOsis: a National cohoRt reseArch","PANDORA","Inclusion Criteria:\n\n* Availability of documented or estimated date of first symptom suggestive of PAH.\n* Availability of documented date of confirmed PAH diagnosis.\n\nExclusion Criteria:\n\n* Patients with pulmonary hypertension not classified as Group 1 (e.g., due to left heart disease, chronic lung disease, or chronic thromboembolic disease).\n* Patients with insufficient data to determine either the date of symptom onset or the date of confirmed diagnosis.\n* Patients diagnosed only clinically or by echocardiography, without confirmation by right heart catheterization.","ALL","18 Years",{"count":57,"type":58},139,"ESTIMATED","OBSERVATIONAL","Understanding Delays in the Diagnosis of Pulmonary Arterial Hypertension and Rare Diseases in Brazil: A Multicenter Observational Study\n\n\\--- 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.\n\nThis 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.\n\nThe 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.\n\nThis study does not involve any intervention and poses no additional risk to participants, as it is based solely on retrospective data from medical records.",[62,63,64],"Pulmonary Arterial Hypertension (PAH)","Pulmonary Arterial Hypertension (PAH) (WHO Group 1 PH)","Pulmonary Arterial Hypertension",[66,67,68,69,70,71,72],"Pulmonary Hypertension","Diagnostic Delay","Right Heart Catheterization","Early Diagnosis","Diagnostic Journey","Risk Stratification","Differential Diagnoses","2025-09-26",{"date":75,"type":76},"2025-09-30","ACTUAL",{"date":78,"type":76},"2025-07-07",{"date":80,"type":58},"2027-12",{"name":5,"class":6},1]