[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100241294":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":10,"centralContacts":12,"locations":23,"responsibleParty":61,"collaborators":64,"id":107,"slug":108,"hasResults":109,"nctId":110,"briefTitle":111,"officialTitle":112,"acronym":113,"eligibilityCriteria":114,"healthyVolunteers":109,"sex":115,"minAge":10,"maxAge":10,"enrollmentInfo":116,"targetDuration":119,"studyType":120,"phases":10,"briefSummary":121,"conditions":122,"keywords":124,"overallStatus":26,"whyStopped":10,"lastUpdateSubmitDate":125,"lastUpdatePostDateStruct":126,"startDateStruct":129,"completionDateStruct":131,"leadSponsor":133,"locationsCount":134},{"fullName":5,"class":6},"University Hospital Muenster","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":10},"PCD",null,"Individuals with Primary Ciliary Dyskinesia will be assessed in a pure observational design without intervention",[13,19],{"name":14,"role":15,"phone":16,"phoneExt":17,"email":18},"Petra Pennekamp, PhD","CONTACT","+4925183","41097","petra.pennekamp@ukmuenster.de",{"name":20,"role":15,"phone":16,"phoneExt":21,"email":22},"Simone Helms","48358","Simone.Helms@ukmuenster.de",[24,49],{"facility":25,"status":26,"city":27,"state":28,"zip":29,"country":30,"countryCode":31,"cosmosGeoPoint":32,"geoPoint":37,"contacts":38},"University Hospital Münster","RECRUITING","Münster","North Rhine-Westphalia","48149","Germany","DE",{"type":33,"coordinates":34},"Point",[35,36],7.62571,51.96236,{"lat":36,"lon":35},[39,43,44,46],{"name":40,"role":15,"phone":41,"phoneExt":17,"email":42},"Heymut Omran, Prof. Dr. MD","004925183","PCDregistry.eu@ukmuenster.de",{"name":20,"role":15,"phone":16,"phoneExt":21,"email":22},{"name":40,"role":45,"phone":10,"phoneExt":10,"email":10},"PRINCIPAL_INVESTIGATOR",{"name":47,"role":48,"phone":10,"phoneExt":10,"email":10},"Johanna Raidt, MD, Dr. med.","SUB_INVESTIGATOR",{"facility":50,"status":26,"city":27,"state":10,"zip":29,"country":30,"countryCode":31,"cosmosGeoPoint":51,"geoPoint":53,"contacts":54},"University Hospital Muenster, Department of General Pediatrics",{"type":33,"coordinates":52},[35,36],{"lat":36,"lon":35},[55,56,57,59],{"name":14,"role":15,"phone":16,"phoneExt":17,"email":18},{"name":20,"role":15,"phone":16,"phoneExt":21,"email":22},{"name":58,"role":45,"phone":10,"phoneExt":10,"email":10},"Heymut Omran, Prof. Dr.",{"name":60,"role":48,"phone":10,"phoneExt":10,"email":10},"Johanna Raidt, Dr. med.",{"type":45,"investigatorFullName":62,"investigatorTitle":63,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"Petra Pennekamp","Dr",[65,67,69,71,73,75,77,79,81,83,85,87,89,91,93,95,97,99,101,103,105],{"name":66,"class":6},"European Commission",{"name":68,"class":6},"University of Nicosia",{"name":70,"class":6},"Rigshospitalet, Denmark",{"name":72,"class":6},"KU Leuven",{"name":74,"class":6},"Hannover Medical School",{"name":76,"class":6},"Attikon Hospital",{"name":78,"class":6},"Amsterdam UMC, location VUmc",{"name":80,"class":6},"University of Bern",{"name":82,"class":6},"University of Southampton",{"name":84,"class":6},"Royal Brompton & Harefield NHS Foundation Trust",{"name":86,"class":6},"University of North Carolina",{"name":88,"class":6},"Ruhr University of Bochum",{"name":90,"class":6},"Federico II University",{"name":92,"class":6},"Hospital Vall d'Hebron",{"name":94,"class":6},"Medical University of Vienna",{"name":96,"class":6},"Marmara University",{"name":98,"class":6},"University Hospital, Martin",{"name":100,"class":6},"University of Pisa",{"name":102,"class":6},"Assistance Publique - Hôpitaux de Paris",{"name":104,"class":6},"University of Alberta",{"name":106,"class":6},"University of Giessen","100241294","international-primary-ciliary-dyskinesia-pcd-registry-100241294",false,"NCT02419365","International Primary Ciliary Dyskinesia (PCD) Registry","International Prospective Primary Ciliary Dyskinesia (PCD) Registry for Systematic Data Collection on Incidence, Clinical Presentation, Treatment and Course of the Disease","PCDregistry","Inclusion Criteria\n\nPatients of any age who fulfil the diagnostic criteria below are eligible:\n\nClinical presentation consistent with PCD and consistent findings specific for PCD in at least two of the following methods:\n\nhigh frequency video microscopic finding transmission electron microscopy finding immunofluorescence finding low nasal NO concentration\u002Fproduction demonstration of biallelic disease-causing mutations by genotyping\n\nGiven the complexity of diagnosing PCD, it is anticipated that not all patients will meet these definite diagnostic criteria. Therefore, individuals with typical clinical symptoms and only one abnormal diagnostic test are also eligible to enter the registry. These cases usually are considered to have a possible PCD diagnosis with exceptions made on an individual basis.\n\nExclusion Criteria Failure or unwillingness to give written informed consent. Missing qualification to perform legal acts or insufficient cognitive ability to give informed consent. A second disease is no exclusion criteria for including data in the PCD-Registry, especially since it is one of the fundamental goals, to learn about co-morbidities.","ALL",{"count":117,"type":118},2000,"ESTIMATED","20 Years","OBSERVATIONAL","The purpose of the international prospective PCD Patient Registry is to systematically measure, survey and compare different aspects of PCD manifestation, course and treatment, to provide data for epidemiological research and to identify special patient groups suitable for multi-center trials.\n\nThis International PCD Registry is also part of the European Reference Network ERN-LUNG. We follow the recommendations of the EU Expert Committee on Rare Diseases (EUCERD), which recommend an international interoperability of registries and databases to pool and exchange knowledge and data on rare diseases.",[123],"Primary Ciliary Dyskinesia (PCD)",[123],"2022-11-25",{"date":127,"type":128},"2022-11-28","ACTUAL",{"date":130,"type":10},"2014-01",{"date":132,"type":118},"2030-12",{"name":5,"class":6},2]