[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100556409":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":15,"centralContacts":22,"locations":28,"responsibleParty":44,"collaborators":10,"id":46,"slug":47,"hasResults":48,"nctId":49,"briefTitle":50,"officialTitle":50,"acronym":10,"eligibilityCriteria":51,"healthyVolunteers":48,"sex":52,"minAge":10,"maxAge":10,"enrollmentInfo":53,"targetDuration":10,"studyType":56,"phases":10,"briefSummary":57,"conditions":58,"keywords":60,"overallStatus":30,"whyStopped":10,"lastUpdateSubmitDate":71,"lastUpdatePostDateStruct":72,"startDateStruct":75,"completionDateStruct":77,"leadSponsor":79,"locationsCount":80},{"fullName":5,"class":6},"International PNH Interest Group","OTHER",[8,12],{"label":9,"type":10,"description":11,"interventionNames":10},"PNH patients not receiving anti-complement treatment",null,"PNH patients of any age who are not receiving any anti-complement treatment",{"label":13,"type":10,"description":14,"interventionNames":10},"PNH patients receiving anti-complement treatment","PNH patients of any age who are receiving an approved anti-complement treatment",[16,19],{"name":17,"affiliation":5,"role":18},"Richard Kelly, MBChB PhD","PRINCIPAL_INVESTIGATOR",{"name":20,"affiliation":5,"role":21},"Jeff Szer, MB BS FRACP","STUDY_CHAIR",[23],{"name":24,"role":25,"phone":26,"phoneExt":10,"email":27},"IPIG Registry Coordinator","CONTACT","Please email","registry@pnhinterestgroup.org",[29],{"facility":5,"status":30,"city":31,"state":32,"zip":33,"country":34,"countryCode":35,"cosmosGeoPoint":36,"geoPoint":41,"contacts":42},"RECRUITING","Altamonte Springs","Florida","32714","United States","US",{"type":37,"coordinates":38},"Point",[39,40],-81.36562,28.66111,{"lat":40,"lon":39},[43],{"name":24,"role":25,"phone":10,"phoneExt":10,"email":27},{"type":45,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100556409","the-international-pnh-interest-group-pnh-registry-100556409",false,"NCT06524726","The International PNH Interest Group PNH Registry","Inclusion Criteria:\n\n* Patients with PNH confirmed by flow cytometry.\n* Patient and\u002For parent\u002Flegally authorized representative provide written informed consent\u002Fassent to participate in the registry in a manner approved by the Institutional Review Board\u002FIndependent Ethics Committee and local regulations.\n\nExclusion Criteria:\n\n* Participating in an interventional PNH clinical trial. Note: A patient included in the registry, who enrolls in an interventional PNH clinical trial during the course of the registry, will be kept in the registry but data collection will be paused in the registry during their involvement in the clinical trial\u002Fextension study. Data collection in the registry will continue after patient involvement in the clinical trial\u002Fextension study has ended or trial protocol mandated data collection ceases.","ALL",{"count":54,"type":55},2000,"ESTIMATED","OBSERVATIONAL","The aim of this International PNH Interest Group (IPIG) registry is to develop an international database to prospectively collect data on patients with PNH covering clinical outcomes, patient reported outcomes (PROs), and health-resource utilization (HRU) on all enrolled patients, as well as long term safety data.",[59],"Paroxysmal Nocturnal Hemoglobinuria",[61,62,63,59,64,65,66,67,68,69,70],"PNH","Registry","Patient Registry","Anemia, Hemolytic","Anemia","Hematologic Diseases","Myelodysplastic Syndromes","Bone Marrow Diseases","Hemoglobinuria","Hemoglobinuria, Paroxysmal","2024-07-23",{"date":73,"type":74},"2024-07-29","ACTUAL",{"date":76,"type":74},"2024-05-10",{"date":78,"type":55},"2029-05-10",{"name":5,"class":6},1]