[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100327954":3},{"organization":4,"armGroups":7,"interventions":8,"overallOfficials":7,"centralContacts":12,"locations":21,"responsibleParty":40,"collaborators":42,"id":48,"slug":49,"hasResults":50,"nctId":51,"briefTitle":52,"officialTitle":53,"acronym":54,"eligibilityCriteria":55,"healthyVolunteers":50,"sex":56,"minAge":7,"maxAge":7,"enrollmentInfo":57,"targetDuration":60,"studyType":61,"phases":7,"briefSummary":62,"conditions":63,"keywords":7,"overallStatus":23,"whyStopped":7,"lastUpdateSubmitDate":66,"lastUpdatePostDateStruct":67,"startDateStruct":70,"completionDateStruct":72,"leadSponsor":74,"locationsCount":75},{"fullName":5,"class":6},"McMaster University","OTHER",null,[9],{"type":6,"name":10,"description":11,"armGroupLabels":7,"otherNames":7},"Quality of life measure (survey)","The QoL tool is a questionnaire",[13,18],{"name":14,"role":15,"phone":16,"phoneExt":7,"email":17},"Mark Skinner","CONTACT","202.253.8342","mskinnerdc@gmail.com",{"name":19,"role":15,"phone":7,"phoneExt":7,"email":20},"Alfonso Iorio","iorioa@mcmaster.ca",[22],{"facility":5,"status":23,"city":24,"state":25,"zip":26,"country":27,"countryCode":28,"cosmosGeoPoint":29,"geoPoint":34,"contacts":35},"RECRUITING","Hamilton","Ontario","L8S4B2","Canada","CA",{"type":30,"coordinates":31},"Point",[32,33],-79.84963,43.25011,{"lat":33,"lon":32},[36],{"name":37,"role":15,"phone":38,"phoneExt":39,"email":20},"Alfonso Iorio, MD","9055259140","22421",{"type":41,"investigatorFullName":7,"investigatorTitle":7,"investigatorAffiliation":7,"oldNameTitle":7,"oldOrganization":7},"SPONSOR",[43,46],{"name":44,"class":45},"Patient Outcomes Research Group (PORG)","UNKNOWN",{"name":47,"class":45},"National Hemophilia Foundation","100327954","patient-reported-outcomes-burdens-and-experiences---phase-3-100327954",false,"NCT03549858","Patient Reported Outcomes Burdens and Experiences - Phase 3","Patient Reported Outcomes Burdens and Experiences (PROBE) - Phase 3 - Longitudinal Data Collection","PROBE-3","Inclusion Criteria:\n\n* PWH will be recruited through national hemophilia patient organizations utilizing their existing membership rosters, social media outlets and meetings \u002F events. The investigators are not proposing a pre-determined method of PWH recruitment. They will utilize the information acquired in the workshop and take-home project to inform best practice in recruitment methodology for the study. The investigators may consider requesting different countries test different PWH recruitment strategies to test reproducibility.\n\nIn the future, the questionnaire might also be administered to patients with other chronic conditions.\n\nExclusion Criteria:\n\n* Disease severity and Age bands or age limits (e.g. ≥ Age 18) may be utilized to narrow the study population.","ALL",{"count":58,"type":59},1000,"ESTIMATED","5 Years","OBSERVATIONAL","The PROBE Phase-3 study will collect data on patient reported outcomes, burdens, and experiences in patients living with hemophilia. The investigators will perform comparisons among countries, within country over time, within country against national normative data.",[64,65],"Hemophilia","Chronic Disease","2025-08-18",{"date":68,"type":69},"2025-08-22","ACTUAL",{"date":71,"type":69},"2018-01-01",{"date":73,"type":59},"2027-12-31",{"name":5,"class":6},1]