[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100547719":3},{"organization":4,"armGroups":7,"interventions":13,"overallOfficials":19,"centralContacts":23,"locations":29,"responsibleParty":44,"collaborators":10,"id":46,"slug":47,"hasResults":48,"nctId":49,"briefTitle":50,"officialTitle":51,"acronym":10,"eligibilityCriteria":52,"healthyVolunteers":48,"sex":53,"minAge":54,"maxAge":55,"enrollmentInfo":56,"targetDuration":10,"studyType":59,"phases":10,"briefSummary":60,"conditions":61,"keywords":63,"overallStatus":32,"whyStopped":10,"lastUpdateSubmitDate":72,"lastUpdatePostDateStruct":73,"startDateStruct":76,"completionDateStruct":78,"leadSponsor":80,"locationsCount":81},{"fullName":5,"class":6},"Novartis","INDUSTRY",[8],{"label":9,"type":10,"description":9,"interventionNames":11},"Participants with PNH",null,[12],"Other: PNH-relevant therapies",[14],{"type":15,"name":16,"description":17,"armGroupLabels":18,"otherNames":10},"OTHER","PNH-relevant therapies","This is an observational study. There is no treatment allocation. The decision to initiate PNH-relevant therapies (such as eculizumab, ravulizumab, pegcetacoplan, iptacopan, and others) will be based solely on clinical judgement.",[9],[20],{"name":21,"affiliation":21,"role":22},"Novartis Pharmaceuticals","STUDY_DIRECTOR",[24,28],{"name":21,"role":25,"phone":26,"phoneExt":10,"email":27},"CONTACT","+41613241111","novartis.email@novartis.com",{"name":21,"role":25,"phone":10,"phoneExt":10,"email":10},[30],{"facility":31,"status":32,"city":33,"state":34,"zip":35,"country":36,"countryCode":37,"cosmosGeoPoint":38,"geoPoint":43,"contacts":10},"Novartis Investigative Site","RECRUITING","East Hanover","New Jersey","07936","United States","US",{"type":39,"coordinates":40},"Point",[41,42],-74.36487,40.8201,{"lat":42,"lon":41},{"type":45,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100547719","home-reported-outcomes-in-pnh-100547719",false,"NCT06411626","Home Reported Outcomes in PNH","Home Reported Outcomes in PNH: A Mobile App-Based, Prospective, Observational Program to Evaluate Disease Burden and Treatment Patterns in Paroxysmal Nocturnal Hemoglobinuria in the US","Inclusion Criteria:\n\nStudy participants eligible for inclusion in this study must meet all of the following criteria:\n\n* Aged 18 or older\n* US-based with a proficient understanding of and ability to read the English language\n* Any patient with a diagnosis of PNH, regardless of symptom or treatment history\n\nExclusion Criteria:\n\nStudy participants who do not fit all inclusion criteria listed above are unable to participate in this study. Outside of required inclusion criteria, there are no other exclusion criteria in order to meet the exploratory nature of the primary endpoint.","ALL","18 Years","99 Years",{"count":57,"type":58},128,"ESTIMATED","OBSERVATIONAL","The study aims to longitudinally capture the full spectrum of symptoms, treatment utilization, and overall Health-Related Quality of Life (HRQoL) experienced by PNH patients. By primarily utilizing home reported outcomes (HRO) data on symptom burden and treatment usage, supplemented with patient-reported outcome (PRO) measures, the study seeks to establish a new real-world data (RWD) source to understand symptom variability and HRQoL among PNH patients, including those receiving orally administered iptacopan.",[62],"Paroxysmal Nocturnal Hemoglobinuria",[64,65,66,67,68,69,70,71],"Paroxysmal nocturnal hemoglobinuria","PNH","home reported outcomes","HRO","patient-reported outcome","PRO","real-world data","iptacopan","2025-08-26",{"date":74,"type":75},"2025-08-27","ACTUAL",{"date":77,"type":75},"2024-06-11",{"date":79,"type":58},"2026-06-15",{"name":21,"class":6},1]