[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"primary-ciliary-dyskinesia-pcd\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:primary-ciliary-dyskinesia-pcd":27},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,6,0,[8,46,69,95,127,152],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":18,"maxAge":19,"enrollmentInfo":20,"targetDuration":23,"studyType":24,"phases":4,"briefSummary":25,"conditions":26,"keywords":28,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":34,"lastUpdatePostDateStruct":35,"startDateStruct":38,"completionDateStruct":40,"leadSponsor":42,"locationsCount":45},"100649857","malnutrition-and-sarcopenia-among-primary-ciliary-dyskinesia-100649857",false,"NCT07740538","Malnutrition and Sarcopenia Among Primary Ciliary Dyskinesia","Associations Between the Status of Malnutrition and Sarcopenia in Children and Adolescents With Primary Ciliary Dyskinesia","Malnutrition","Inclusion Criteria:\n\nInclusion criteria for children and adolescents with PCD\n\n1. Unexplained neonatal respiratory distress, lateralization defect, productive cough, bronchiectasis, daily nasal congestion, and pansinusitis, as well as laboratory tests such as high-speed video microscopy, transmission electron microscopy, or genetic testing according to the European Respiratory Society diagnostic guidelines.\n2. Cooperative individuals,\n3. Individuals who have never smoked\n4. Willingness to participate in the study\n\nInclusion criteria for healthy children and adolescents:\n\n1\\. Voluntary participation in the study\n\nExclusion Criteria:\n\nExclusion criteria for children and adolescents with PCD:\n\n1. Individuals with any acute, chronic, or systemic illness other than PCD\n2. Individuals who smoke or are quitting smoking\n3. Individuals who are not willing to participate in the study\n4. Individuals who are uncooperative","ALL","6 Years","18 Years",{"count":21,"type":22},15,"ESTIMATED","6 Months","OBSERVATIONAL","The prevalence and causes of malnutrition and sarcopenia in children and adolescents with Primary ciliary dyskinesia (PCD) have not been sufficiently elucidated. The aim of this study is to investigate the prevalence of malnutrition and sarcopenia in children and adolescents with PCD.",[27],"Primary Ciliary Dyskinesia (PCD)",[15,29,30,31,32],"Muscle strength","Sarcopenia","Respiratory function test","Primary Ciliary Dyskinesia","NOT_YET_RECRUITING","2026-07-28",{"date":36,"type":37},"2026-07-31","ACTUAL",{"date":39,"type":22},"2026-08-03",{"date":41,"type":22},"2028-07-01",{"name":43,"class":44},"Izmir Democracy University","OTHER",1,{"id":47,"slug":48,"hasResults":11,"nctId":49,"briefTitle":50,"officialTitle":51,"acronym":4,"eligibilityCriteria":52,"healthyVolunteers":53,"sex":17,"minAge":18,"maxAge":19,"enrollmentInfo":54,"targetDuration":4,"studyType":24,"phases":4,"briefSummary":56,"conditions":57,"keywords":58,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":34,"lastUpdatePostDateStruct":63,"startDateStruct":64,"completionDateStruct":66,"leadSponsor":68,"locationsCount":45},"100649782","comparison-of-individuals-with-primary-ciliary-dyskinesia-and-healthy-controls-100649782","NCT07740551","Comparison of Individuals With Primary Ciliary Dyskinesia and Healthy Controls","Comparison of Nutritional Status and Sarcopenia Between Children and Adolescents With Primary Ciliary Dyskinesia and Healthy Children","Inclusion Criteria for Children and Adolescents with Primary Ciliary Dyskinesia:\n\n* To be between the ages of 6-18\n* To have been diagnosed with primary ciliary dyskinesia\n* To be clinically stable for at least 3 weeks\n* To have the necessary cooperation for the measurements\n* To volunteer to participate in the study\n\nInclusion Criteria for Healthy Children and Adolescents:\n\n* To be between the ages of 6-18\n* To be in a similar average and ratio with the group of children and adolescents with primary ciliary dyskinesia in terms of age and gender\n* To have the necessary cooperation for the measurements\n* To volunteer to participate in the study\n\nExclusion Criteria for Children and Adolescents with Primary Ciliary Dyskinesia:\n\n* Having any orthopedic, neurological, psychological or cardiovascular problem that may prevent the measurements from being performed in the last 6 months\n* Smoking or quitting smoking\n\nExclusion Criteria for Healthy Children and Adolescents:\n\n* Having any orthopedic, neurological, psychological or cardiovascular problem that may prevent the measurements from being performed in the last 6 months\n* Having any chronic disease\n* Smoking or quitting smoking",true,{"count":55,"type":22},30,"To date, the literature has not yet elucidated the status of malnutrition and sarcopenia in children and adolescents with PCD compared to healthy controls. Therefore, the aim of this study is to compare the nutritional and sarcopenia status of children and adolescents with primary ciliary dyskinesia to that of healthy controls.",[27],[59,60,61,62],"primary ciliary dyskinesia (PCD)","sarcopenia","respiratory function test","malnutrion",{"date":36,"type":37},{"date":65,"type":22},"2026-08-01",{"date":67,"type":22},"2027-08-01",{"name":43,"class":44},{"id":70,"slug":71,"hasResults":11,"nctId":72,"briefTitle":73,"officialTitle":74,"acronym":75,"eligibilityCriteria":76,"healthyVolunteers":11,"sex":17,"minAge":19,"maxAge":4,"enrollmentInfo":77,"targetDuration":4,"studyType":78,"phases":79,"briefSummary":81,"conditions":82,"keywords":4,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":86,"lastUpdatePostDateStruct":87,"startDateStruct":89,"completionDateStruct":91,"leadSponsor":93,"locationsCount":4},"100633791","developing-resource-interventions-for-healthcare-professionals-and-patients-to-improve-knowledge-about-fertility-in-primary-ciliary-dyskinesia-100633791","NCT07531277","Developing Resource Interventions for Healthcare Professionals and Patients to Improve Knowledge About Fertility in Primary Ciliary Dyskinesia","REproductive Health in PRimary Ciliary Dyskinesia: Developing User-informed Clinical and Educational Resources (REPRoDUCE)","REPRoDUCE","Inclusion Criteria:\n\n1. Aged 18 years or older\n2. 'Highly likely' or confirmed diagnosis of Primary Ciliary dyskinesia, or being a healthcare professional, or representative from a stakeholder group e.g. patient led charity\n3. Able to understand and willing to sign the informed participant consent prior to participation\n\nExclusion Criteria:\n\n1. Unwilling to participate in the study\n2. Not meeting inclusion criteria\n3. Unable to understand or unwilling to sign the informed participant consent prior to participation",{"count":55,"type":22},"INTERVENTIONAL",[80],"NA","This project will involve working with people with PCD and medical professionals to develop resources that will help patients and the people providing their care to better understand fertility and pregnancy safety in people with this condition.",[27,83,84,85],"Fertility","Pregnancy","Health Information Exchange","2026-04-08",{"date":88,"type":37},"2026-04-15",{"date":90,"type":22},"2026-04-01",{"date":92,"type":22},"2029-03-31",{"name":94,"class":44},"University of Southampton",{"id":96,"slug":97,"hasResults":11,"nctId":98,"briefTitle":99,"officialTitle":100,"acronym":4,"eligibilityCriteria":101,"healthyVolunteers":11,"sex":17,"minAge":18,"maxAge":102,"enrollmentInfo":103,"targetDuration":4,"studyType":78,"phases":105,"briefSummary":106,"conditions":107,"keywords":111,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":118,"lastUpdatePostDateStruct":119,"startDateStruct":121,"completionDateStruct":123,"leadSponsor":125,"locationsCount":45},"100621866","digital-physiotherapy-for-pediatric-chronic-suppurative-lung-diseases-100621866","NCT07376187","Digital Physiotherapy for Pediatric Chronic Suppurative Lung Diseases","Digital Physiotherapy Services in the Management of Pediatric Chronic Suppurative Lung Diseases: A Randomized Controlled Trial","Inclusion Criteria\n\n* children aged 6 to 12 years old\n* clinically stable with an absence of pulmonary exacerbation four weeks prior to the study's recruitment\n* adherence to attend regular medical follow-up from a pediatric pulmonologist every three months\n\nExclusion Criteria:\n\n* Cystic fibrosis\n* Immunodeficiency or asthma as their primary condition\n* Clinical evidence of cardiovascular, neuromuscular, metastatic, or psychiatric comorbidities, and neuromuscular or musculoskeletal impairments that affect mobility and the ability to follow instructions\n* Medical history of lung transplant\n* Participation in other rehabilitation programs, or attendance at regular physiotherapy ACTs sessions (\\>10 sessions in a 3-month period)\n* Lack access to the internet (e.g., no smartphone, tablet, or laptop)\n* Inability to use technological devices","12 Years",{"count":104,"type":22},32,[80],"This is a prospective, single-center, two-arm (1:1), assessor-blinded, randomized controlled clinical trial that will be conducted in collaboration with the outpatient clinic of the third Pediatric Pulmonology Unit, \"Attikon\" University Hospital of Athens in Greece. The aim of the study is to investigate the effects of applying digital physiotherapy services in the management of specific clinical outcomes in children with chronic suppurative lung diseases, other than cystic fibrosis. The research question is whether airway clearance techniques and exercise training that are performed remotely using digital health services (DHSs) can improve functional and exercise capacity, as well as compliance with ACTs, compared to usual care. The intervention program includes airway clearance techniques (ACTs), as well as aerobic and strengthening exercises that can be implemented easily in an online setting at home with minimal equipment. The duration of the program will be 12 weeks, and the prescribed weekly regimen will consist of 50-minute remote sessions: two synchronous, supervised sessions conducted via the Vsee platform, and a minimum of one asynchronous, unsupervised session. Children will be encouraged to maintain daily adherence to the exercise protocol.",[108,109,27,110],"Chronic Suppurative Lung Disease","Protracted Bacterial Bronchitis","Non Cystic Fibrosis Bronchiectasis",[112,113,114,115,116,117],"chronic suppurative lung diseases","digital health services","pediatric","physiotherapy","remote","website","2026-01-28",{"date":120,"type":37},"2026-01-30",{"date":122,"type":22},"2026-05-01",{"date":124,"type":22},"2028-08-31",{"name":126,"class":44},"University of Thessaly",{"id":128,"slug":129,"hasResults":11,"nctId":130,"briefTitle":131,"officialTitle":131,"acronym":4,"eligibilityCriteria":132,"healthyVolunteers":11,"sex":17,"minAge":19,"maxAge":4,"enrollmentInfo":133,"targetDuration":4,"studyType":24,"phases":4,"briefSummary":134,"conditions":135,"keywords":136,"overallStatus":143,"whyStopped":4,"lastUpdateSubmitDate":144,"lastUpdatePostDateStruct":145,"startDateStruct":147,"completionDateStruct":149,"leadSponsor":150,"locationsCount":45},"100620433","a-qualitative-study-investigating-the-lived-experiences-and-impact-of-reproductive-issues-in-adults-with-primary-ciliary-dyskinesia-100620433","NCT07357558","A Qualitative Study Investigating the Lived Experiences and Impact of Reproductive Issues in Adults With Primary Ciliary Dyskinesia","Inclusion Criteria:\n\n* Lives in United Kingdom\n* 'likely' or 'confirmed' diagnosis of PCD\n* able and willing to sign the consent form\n\nExclusion Criteria:\n\n* unwilling to participate in the study\n* not meeting inclusion criteria",{"count":55,"type":22},"Study involving undertaking research interviews with adults who have primary ciliary dyskinesia in the UK about their views and experiences of fertility, pregnancy and parenthood",[27],[137,138,139,140,141,142],"fertility","pregnancy","reproduction","parenthood","qualitative","interviews","RECRUITING","2026-01-21",{"date":146,"type":37},"2026-01-22",{"date":148,"type":37},"2025-09-02",{"date":36,"type":22},{"name":151,"class":44},"University Hospital Southampton NHS Foundation Trust",{"id":153,"slug":154,"hasResults":11,"nctId":155,"briefTitle":156,"officialTitle":157,"acronym":158,"eligibilityCriteria":159,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":160,"targetDuration":162,"studyType":24,"phases":4,"briefSummary":163,"conditions":164,"keywords":165,"overallStatus":143,"whyStopped":4,"lastUpdateSubmitDate":166,"lastUpdatePostDateStruct":167,"startDateStruct":169,"completionDateStruct":171,"leadSponsor":173,"locationsCount":175},"100241294","international-primary-ciliary-dyskinesia-pcd-registry-100241294","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.",{"count":161,"type":22},2000,"20 Years","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.",[27],[27],"2022-11-25",{"date":168,"type":37},"2022-11-28",{"date":170,"type":4},"2014-01",{"date":172,"type":22},"2030-12",{"name":174,"class":44},"University Hospital Muenster",2]