[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"primary-ciliary-dyskinesia\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:primary-ciliary-dyskinesia":27},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,14,0,[8,50,86,109,135,155,174,193,220,244,264,286,309,334],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":18,"maxAge":4,"enrollmentInfo":19,"targetDuration":4,"studyType":22,"phases":23,"briefSummary":25,"conditions":26,"keywords":29,"overallStatus":37,"whyStopped":4,"lastUpdateSubmitDate":38,"lastUpdatePostDateStruct":39,"startDateStruct":42,"completionDateStruct":44,"leadSponsor":46,"locationsCount":49},"100054091","clearance-in-primary-ciliary-dyskinesia-100054091",false,"NCT07699302","Clearance in Primary Ciliary Dyskinesia","Evaluating Non-ciliary Mechanisms of Airway Clearance in Muco-obstructive Lung Disease","CLIP","Inclusion Criteria:\n\n* 18 years old or older\n* Diagnosis of PCD with supporting genetics\n* Lung function with forced expiratory volume in 1 second (FEV1) percent predicted \\>30%\n* Ability to exercise for 20 minutes (Exercise Assessment performed at screening visit)\n\nExclusion Criteria:\n\n* Intolerance to 7% HS\n* Failure of HS tolerance test (HSTT) at visit 1 (V1), defined as a decline of 10% in FEV1 from baseline pre-bronchodilator (BD) FEV1 after 7% HS\n* Intolerance to levalbuterol\n* Exercise-induced asthma\n* Complex congenital heart disease or other exercise limitation\n* Lung transplantation or listed for lung transplantation\n* History of lung resection of the lung analyzed by MCC (depending on situs status)\n* Pregnancy or unwillingness to use approved birth control during study period\n* Recent hemoptysis (\\>60 ml in the last 3 months)\n* Pulmonary exacerbation in preceding 4 weeks\n* Change in pulmonary therapies within preceding 4 weeks\n* Resting or exertional O2 requirement (nocturnal acceptable)\n* Tobacco \u002F smoking history (any within last year, and \\>10 pack year history in past)\n* More than 2 chest computed tomography (CT) scans in the past year or a combination of procedures believed to have exposed the lungs to \\>150 millisieverts (mSv), including from other research studies\n* Participation in another interventional trial within 30 days","ALL","18 Years",{"count":20,"type":21},8,"ESTIMATED","INTERVENTIONAL",[24],"NA","Understanding mechanisms of mucus clearance from the airways may lead to treatments in muco-obstructive lung conditions. Mucociliary clearance (MCC) scans are a way to measure the rate at which a person's lungs can clear inhaled particles. Through a single-arm pilot study in participants with primary ciliary dyskinesia (PCD), the investigators will evaluate the effect of exercise as a way to increase clearance through a mechanism called gas liquid transport (GLT) where the faster flow of air through the lungs during exercise is able to clear more particles. The investigators will repeat MCC measures with exercise after administering hypertonic saline (HS) to evaluate the effects of mucus hydration on both GLT and cough clearance (CC).\n\nAim 1. To quantify non-ciliary, non-cough mechanisms of mucus clearance (i.e., GLT) in PCD through an MCC protocol that introduces a standardized exercise intervention after isotope delivery.\n\nAim 2. To evaluate whether exercise-induced GLT and\u002For CC are responsive to hydrator intervention, using a short acting bronchodilator with 7% HS prior to isotope delivery followed by MCC with exercise intervention.",[27,28],"Primary Ciliary Dyskinesia","PCD",[30,31,32,33,34,35,36],"exercise","primary ciliary dyskinesia","airway clearance","mucociliary clearance","hypertonic saline","cough clearance","gas liquid transport","NOT_YET_RECRUITING","2026-07-09",{"date":40,"type":41},"2026-07-13","ACTUAL",{"date":43,"type":21},"2026-07-30",{"date":45,"type":21},"2027-01",{"name":47,"class":48},"University of North Carolina, Chapel Hill","OTHER",1,{"id":51,"slug":52,"hasResults":11,"nctId":53,"briefTitle":54,"officialTitle":54,"acronym":55,"eligibilityCriteria":56,"healthyVolunteers":57,"sex":17,"minAge":18,"maxAge":4,"enrollmentInfo":58,"targetDuration":60,"studyType":61,"phases":4,"briefSummary":62,"conditions":63,"keywords":68,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":77,"lastUpdatePostDateStruct":78,"startDateStruct":80,"completionDateStruct":82,"leadSponsor":84,"locationsCount":49},"100614056","a-cohort-for-inflammatory-respiratory-diseases-from-phenotyping-to-personalised-medicine-100614056","NCT07274631","A Cohort for Inflammatory Respiratory Diseases: From Phenotyping to Personalised Medicine","PALMIRE","Inclusion Criteria:\n\n* Age ≥ 18 years\n* Follow-up for one of the following conditions: asthma, COPD, bronchiectasis (DDB), cystic fibrosis (CF), primary ciliary dyskinesia (PCD), or interstitial lung diseases (ILD)\n* Healthy volunteers (controls)\n\nExclusion Criteria:\n\n* Subjects protected by law (e.g., legal incapacity)\n* Any condition preventing informed consent or participation",true,{"count":59,"type":21},470,"10 Years","OBSERVATIONAL","Chronic inflammatory pulmonary diseases, including asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis, cystic fibrosis (CF), primary ciliary dyskinesia (PCD) and interstitial lung diseases (ILD) are characterised by lung inflammation and remodelling. Clinical, functional, microbiological, biological, pathological and prognostic features are highly variable and heterogeneous. Several phenotypes have been described within the same pathology, as similar phenotypic traits between different pathologies, or the coexistence of components of several diagnoses in the same patient, suggesting shared underlying mechanisms that could represent new therapeutic targets, beyond the initial medical diagnosis.\n\nThe objectives of this prospective study are to analyze the phenotypic characteristics (clinical, demographic, biological, morphological, pathological, and microbiological characteristics) together with respiratory exposures and underlying mechanisms involving airway epithelium and inflammation processes in a cohort of patients diagnosed with asthma, COPD, bronchiectasis, CF, PCD and ILD.",[64,65,66,67,27],"Chronic Obstructive Pulmonary Disease","Asthma","Bronchiectasis","Cystic Fibrosis",[69,65,66,70,71,72,73,74,75],"Chronic obstructive pulmonary disease","Cystic fibrosis","Primary ciliary dyskinesia","Airway microbiota","Airway epithelium","Remodeling","Exposome","RECRUITING","2026-02-18",{"date":79,"type":41},"2026-02-20",{"date":81,"type":41},"2025-09-15",{"date":83,"type":21},"2040-09-15",{"name":85,"class":48},"CHU de Reims",{"id":87,"slug":88,"hasResults":11,"nctId":89,"briefTitle":90,"officialTitle":91,"acronym":92,"eligibilityCriteria":93,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":94,"targetDuration":4,"studyType":61,"phases":4,"briefSummary":96,"conditions":97,"keywords":4,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":98,"lastUpdatePostDateStruct":99,"startDateStruct":101,"completionDateStruct":103,"leadSponsor":105,"locationsCount":108},"100512363","dcp-radico-cohort-radico-dcp-100512363","NCT05951478","DCP (RaDiCo Cohort) (RaDiCo-DCP)","Primary Ciliary Dyskinesias: Identification of Specific Severity Criteria and Phenotype-genotype Correlation Study","DCP","Inclusion Criteria:\n\n* Patient fulfilling at least one of the following criteria for PCD confirmed diagnosis: Kartagener's syndrome and\u002For specific anomaly of the ciliary ultrastructure and\u002For an unambiguous mutation in a PCD gene\n* Having at least one annual follow-up visit\n\nNon-inclusion Criteria:\n\n* Patients with an unconfirmed diagnosis of PCD\n* Patients with an evolving concomitant pathology that may interfere with the assessment of PCD-related manifestations",{"count":95,"type":21},300,"Primary Ciliary Dyskinesias (PCD) are rare, autosomal recessive respiratory diseases, due to a defect in mucociliary clearance linked to abnormalities in the structure and\u002For function of the cilia. The variety of ciliary abnormalities identified reflects the genetic heterogeneity of PCDs. The thirty or so genes currently implicated explain the pathology in about half of the patients. PCDs are characterized by recurrent infections of the upper (rhinosinusitis) and lower (bronchitis) airways, beginning in early childhood and progressing respectively to nasal polyposis and bronchial dilatation. In half of the cases, there is a lateralization defect of the organs (situs inversus) corresponding to Kartagener's syndrome. There is more frequent infertility in men (immobility of spermatozoa) than in women (miscarriages and tubal pregnancies). About a third of patients progress to respiratory failure. The identification of predictive factors of severity, specific to PCDs, would improve patient care. It is also important to assess the quality of life of patients with PCD, particularly at the ENT level.\n\nData from prevalent patients are currently integrated into three separate and complementary databases: the \"e-RespiRare\" database, the \"DCP Cils\" database and the \"DCP genes\" database. The first step is therefore to constitute the RaDiCo-DCP database which will include data from prevalent and incident patients whose diagnosis of PCD is certain.\n\nThe cohort aims to improve the routine care of PCD patients, in particular by highlighting predictive factors of severity, allowing early and personalized care, to assess the social impact (quality of life) and medical conditions of ENT impairment, as well as adult infertility, to finely characterize the ciliary phenotype. The study also aims to search for new DCP genes and to allow genotype\u002Fphenotype correlation studies.",[27],"2026-02-10",{"date":100,"type":41},"2026-02-12",{"date":102,"type":41},"2017-05-01",{"date":104,"type":21},"2027-05-01",{"name":106,"class":107},"Institut National de la Santé Et de la Recherche Médicale, France","OTHER_GOV",32,{"id":110,"slug":111,"hasResults":11,"nctId":112,"briefTitle":113,"officialTitle":114,"acronym":115,"eligibilityCriteria":116,"healthyVolunteers":57,"sex":17,"minAge":117,"maxAge":4,"enrollmentInfo":118,"targetDuration":4,"studyType":22,"phases":120,"briefSummary":121,"conditions":122,"keywords":124,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":126,"lastUpdatePostDateStruct":127,"startDateStruct":129,"completionDateStruct":131,"leadSponsor":133,"locationsCount":49},"100615147","examining-bronchial-hyperresponsiveness-in-primary-ciliary-dyskinesia-100615147","NCT07288827","Examining Bronchial Hyperresponsiveness in Primary Ciliary Dyskinesia","A Multi-center Study Examining Bronchial Hyperresponsiveness in Primary Ciliary Dyskinesia","BHR","Inclusion Criteria:\n\n* Confirmed diagnosis of PCD per standard diagnostic criteria4 and positive genetics\n* Age greater than or equal to 6 years (no upper age limit)\n* Any gender or race\n* Able to perform pulmonary function testing (historical documentation of reversibility will be accepted)\n\nExclusion Criteria:\n\n* history of current pneumothorax\n* inability to perform pulmonary function testing","6 Years",{"count":119,"type":21},40,[24],"The purpose of this study is to look at children with PCD and see if they have another condition called \"bronchial hyperresponsiveness\".",[27,123],"Healthy",[27,125],"bronchial hyperresponsiveness","2025-12-03",{"date":128,"type":41},"2025-12-17",{"date":130,"type":41},"2023-05-04",{"date":132,"type":21},"2028-04-30",{"name":134,"class":48},"Indiana University",{"id":136,"slug":137,"hasResults":11,"nctId":138,"briefTitle":139,"officialTitle":140,"acronym":4,"eligibilityCriteria":141,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":142,"targetDuration":4,"studyType":61,"phases":4,"briefSummary":144,"conditions":145,"keywords":4,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":146,"lastUpdatePostDateStruct":147,"startDateStruct":149,"completionDateStruct":151,"leadSponsor":153,"locationsCount":49},"100408746","living-with-primary-ciliary-dyskinesia-living-with-pcd-100408746","NCT04602481","Living With Primary Ciliary Dyskinesia (Living With PCD)","Living With Primary Ciliary Dyskinesia (Formerly COVID-PCD)","Inclusion Criteria:\n\n* People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study\n\nExclusion Criteria:\n\n* People who report not to have suspected or confirmed Primary Ciliary Dyskinesia",{"count":143,"type":21},1500,"Living with PCD (formerly COVID-PCD) is a participatory research project that aims to answer emerging questions about primary ciliary dyskinesia (PCD) in order to improve the health and quality of life of people with PCD. Persons with confirmed or suspected PCD from anywhere in the world can participate. The study is advertised through patient support groups and participants register online after they read detailed information about the study. Participants receive a detailed questionnaire when they start the study and a follow-up questionnaire (planned once per year). Occasionally, participants receive extra questionnaires focused on special topics. The study is hosted at the University of Bern and recruitment started on May 30th, 2020.",[27],"2025-11-26",{"date":148,"type":41},"2025-12-02",{"date":150,"type":41},"2020-05-31",{"date":152,"type":21},"2030-05-31",{"name":154,"class":48},"University of Bern",{"id":156,"slug":157,"hasResults":11,"nctId":158,"briefTitle":159,"officialTitle":159,"acronym":160,"eligibilityCriteria":161,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":162,"targetDuration":4,"studyType":61,"phases":4,"briefSummary":164,"conditions":165,"keywords":4,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":167,"lastUpdatePostDateStruct":168,"startDateStruct":169,"completionDateStruct":171,"leadSponsor":173,"locationsCount":49},"100409440","the-ear-nose-throat-ent-prospective-international-cohort-of-pcd-patients-epic-pcd-100409440","NCT04611516","The Ear-Nose-Throat (ENT) Prospective International Cohort of PCD Patients (EPIC-PCD)","EPIC-PCD","Inclusion Criteria:\n\n* Diagnosis of PCD (clinical and test certified)\n* Patient must undergo an ENT examination minimum once a year as part of their clinical follow-up\n\nExclusion Criteria:\n\nNone",{"count":163,"type":21},1000,"The Ear-Nose-Throat (ENT) Prospective International Cohort of patients with Primary Ciliary Dyskinesia (EPIC-PCD) is a prospective observational clinical cohort study, set up as a multinational multi-centre study. It is embedded into routine patient care of participating reference centres for PCD and patients keep being managed according to local procedures and guidelines.",[27,166],"Kartagener Syndrome","2025-11-24",{"date":148,"type":41},{"date":170,"type":41},"2020-03-02",{"date":172,"type":21},"2040-12",{"name":154,"class":48},{"id":175,"slug":176,"hasResults":11,"nctId":177,"briefTitle":178,"officialTitle":178,"acronym":179,"eligibilityCriteria":180,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":181,"targetDuration":183,"studyType":61,"phases":4,"briefSummary":184,"conditions":185,"keywords":4,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":167,"lastUpdatePostDateStruct":186,"startDateStruct":188,"completionDateStruct":190,"leadSponsor":192,"locationsCount":49},"100332278","swiss-primary-ciliary-dyskinesia-registry-100332278","NCT03606200","Swiss Primary Ciliary Dyskinesia Registry","CH-PCD","Inclusion Criteria:\n\n* Patients diagnosed with primary ciliary dyskinesia\n* Signed informed consent or assent\n\nExclusion Criteria:\n\n\\-",{"count":182,"type":21},800,"80 Years","The Swiss Primary Ciliary Dyskinesia (PCD) Registry is a national patient registry that collects information on diagnosis, symptoms, treatment and follow-up of patients with PCD in Switzerland and provides data for national and international monitoring and research.",[27,166],{"date":187,"type":41},"2025-11-25",{"date":189,"type":41},"2013-01",{"date":191,"type":21},"2080-12",{"name":154,"class":48},{"id":194,"slug":195,"hasResults":11,"nctId":196,"briefTitle":197,"officialTitle":198,"acronym":4,"eligibilityCriteria":199,"healthyVolunteers":11,"sex":17,"minAge":200,"maxAge":4,"enrollmentInfo":201,"targetDuration":4,"studyType":22,"phases":203,"briefSummary":204,"conditions":205,"keywords":206,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":212,"lastUpdatePostDateStruct":213,"startDateStruct":214,"completionDateStruct":216,"leadSponsor":218,"locationsCount":49},"100589810","glycine-and-magnesiumthiamine-for-the-treatment-of-primary-ciliary-dyskinesia-100589810","NCT06959251","Glycine and Magnesium+Thiamine for the Treatment of Primary Ciliary Dyskinesia","A Randomized, Placebo-controlled Clinical Trial Evaluating the Efficacy and Safety of Glycine and Magnesium+Thiamine Supplements, Alone or Combined, Administered for 6 Months to Patients With Primary Ciliary Dyskinesia","Inclusion Criteria:\n\n1. Any sex.\n2. Age of 5 years or more.\n3. Diagnosis of primary ciliary dyskinesia (PCD) established according to international recommendations (Shapiro et al. Am J Respir Crit Care Med 2018;197(12):e24-e39, and Shapiro et al. Ped Pulmonol 2016;51:115-132).\n4. Without respiratory exacerbations of PCD in the previous 30 days.\n5. Without acute respiratory infection in the previous 30 days.\n6. Informed consent letter signed by the patient (if the patient's age is 18 years or more).\n7. Informed consent letter signed by the legal guardian, and assent letter signed by the patient (if the patient's age is \\\u003C18 years).\n\nExclusion Criteria:\n\n1\\. Participation in other research protocol involving therapeutic measures.\n\nElimination Criteria:\n\n1\\. None.","5 Years",{"count":202,"type":21},60,[24],"* Patients with primary ciliary dyskinesia (PCD) have trouble with clearing their bronchi from mucus, which in the long-term may produce severe damage to the lungs. Currently, there is no specific treatment for PCD beyond supportive measures such as airway hydration and postural drainage.\n* Glycine is an amino acid with anti-inflammatory properties that proved to be beneficial in another disease with problematic airway clearance, cystic fibrosis.\n* Magnesium participates in many crucial chemical reactions, including some that might favor fluidification and mobilization of mucus. Thiamine (vitamin B1) co-participates with magnesium in some mitochondrial enzymatic reactions occurring in the citric acid cycle.\n* Thus, oral supplements of glycine and magnesium+thiamine might improve symptoms and lung function of patients with PCD, and these effects may even be better if these supplements are combined.\n* In this study, in addition to their usual care, patients with PCD will receive for 6 months one of the following treatments: 1) an oral supplement of 0.5 g\u002Fkg\u002Fday glycine, 2) an oral supplement of up to 400 mg\u002Fday elementary magnesium plus up to 10 mg\u002Fday thiamine, according to the subject's age, 3) glycine plus magnesium+thiamine supplements, as described, or 4) a placebo, which is an inert substance. All treatments will be administered as a whitish powder contained in similar bottles.\n* The investigators will evaluate whether glycine and\u002For magnesium+thiamine reduce exacerbations of the disease, improve pulmonary function and quality of life, and reduce some pro-inflammatory compounds measured in saliva.",[27],[71,207,208,209,210,211],"Glycine","Magnesium","Lung function","thiamine","benfotiamine","2025-11-20",{"date":187,"type":41},{"date":215,"type":41},"2025-10-02",{"date":217,"type":21},"2028-03",{"name":219,"class":107},"Instituto Nacional de Enfermedades Respiratorias",{"id":221,"slug":222,"hasResults":11,"nctId":223,"briefTitle":224,"officialTitle":225,"acronym":28,"eligibilityCriteria":226,"healthyVolunteers":11,"sex":17,"minAge":227,"maxAge":4,"enrollmentInfo":228,"targetDuration":230,"studyType":61,"phases":4,"briefSummary":231,"conditions":232,"keywords":233,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":235,"lastUpdatePostDateStruct":236,"startDateStruct":238,"completionDateStruct":240,"leadSponsor":242,"locationsCount":49},"100507563","utility-of-pcd-diagnostics-to-improve-clinical-care-100507563","NCT05889013","Utility of PCD Diagnostics to Improve Clinical Care","A Clinical Study to Gather Data on the Utility of Tests That Are Used to Make a Diagnosis of Primary Ciliary Dyskinesia (PCD)","Inclusion Criteria:\n\n* Age ≥ 2 years of age\n* Must have two of the following clinical history points:\n* Neonatal respiratory distress\n* Chronic nasal congestion\u002Frunny nose\n* Chronic cough\n* Situs\u002Flaterality defects\n* Bronchiectasis\n* Ability to provide informed consent or consent of parent\u002Fguardian and ass\n\nExclusion Criteria:\n\n* Recent history of sinus surgery or bloody nose in the past week\n* Age \\\u003C 2 years of age\n* Inability to tolerate probe in nose\n* Sinusitis or other respiratory exacerbation currently being treated with antibiotics\n* Admitted to hospital for respiratory exacerbation (inpatient status)\n* Inability to understand the requirements of the study or be unwilling to provide written informed consent (as evidenced by signature on an informed consent document approved by the IRB)\n* Any other reason for which the study investigators feel the patient is not a good candidate to complete the testing","2 Years",{"count":229,"type":21},50,"3 Years","This cross-sectional and longitudinal observational study is to gather data on the utility of tests that are used to make a diagnosis of primary ciliary dyskinesia (PCD). There is new testing available, called nasal nitric oxide testing, that non-invasively measures nitric oxide levels in the sinus cavity. Individuals with PCD characteristically have low levels, but this testing does not have extensive data from everyday clinical practice. The objective of this proposal is to improve the diagnostic approach to children and adults with clinical concerns for primary ciliary dyskinesia (PCD).",[27],[28,234],"nasal nitric oxide testing","2025-09-19",{"date":237,"type":41},"2025-09-22",{"date":239,"type":41},"2023-10-17",{"date":241,"type":21},"2028-12",{"name":243,"class":48},"Connecticut Children's Medical Center",{"id":245,"slug":246,"hasResults":11,"nctId":247,"briefTitle":224,"officialTitle":224,"acronym":4,"eligibilityCriteria":248,"healthyVolunteers":11,"sex":17,"minAge":249,"maxAge":4,"enrollmentInfo":250,"targetDuration":4,"studyType":22,"phases":252,"briefSummary":253,"conditions":254,"keywords":4,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":255,"lastUpdatePostDateStruct":256,"startDateStruct":258,"completionDateStruct":260,"leadSponsor":262,"locationsCount":49},"100339799","utility-of-pcd-diagnostics-to-improve-clinical-care-100339799","NCT03704207","Inclusion Criteria:\n\n* Referred to center for PCD diagnosis considerations\n* Ability to perform study procedures\n* Age greater than 2 years of age\n\nExclusion Criteria:\n\n* Age less than 2 years of age Inability to perform informed consent","1 Year",{"count":251,"type":21},200,[24],"This is a study evaluating the utility of current Primary Ciliary Dyskinesia (PCD) diagnostic tests, including nasal nitric oxide testing.",[27],"2025-06-28",{"date":257,"type":41},"2025-07-01",{"date":259,"type":41},"2017-06-01",{"date":261,"type":21},"2028-06-01",{"name":263,"class":48},"Vanderbilt University Medical Center",{"id":265,"slug":266,"hasResults":11,"nctId":267,"briefTitle":268,"officialTitle":269,"acronym":270,"eligibilityCriteria":271,"healthyVolunteers":11,"sex":17,"minAge":18,"maxAge":4,"enrollmentInfo":272,"targetDuration":4,"studyType":22,"phases":274,"briefSummary":275,"conditions":276,"keywords":4,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":277,"lastUpdatePostDateStruct":278,"startDateStruct":280,"completionDateStruct":282,"leadSponsor":284,"locationsCount":49},"100595218","thermal-spa-treatment-and-improvement-of-primary-ciliary-dyskinesia-100595218","NCT07029594","Thermal Spa Treatment and Improvement of Primary Ciliary Dyskinesia","Interest of Thermal Spa Treatment in Improving ENT-Related Quality of Life in Patients With Primary Ciliary Dyskinesia","CANDY","Inclusion Criteria:\n\n* Confirmed diagnosis of Primary Ciliary Dyskinesia (PCD) based on electron microscopy analysis of ciliary ultrastructure and\u002For genetic testing (i.e., two unambiguous mutations in genes known to be involved in PCD, particularly in cases with normal ciliary ultrastructure \\[\\~20% of patients\\], atypical ultrastructural findings, or suggestive symptoms in a family with a known causal gene).\n* Age over 18 years.\n* Stable maintenance treatment for at least 1 month prior to inclusion.\n* Performance Status (PS) ≤ 1.\n* Patient has received the study information sheet and signed the informed consent form.\n* Patient has valid health insurance coverage.\n\nExclusion Criteria:\n\n* Participation in a thermal spa treatment within the past year.\n* Severe general health deterioration or debilitating conditions.\n* Severe or recent heart failure.\n* Labile hypertension.\n* Venous insufficiency or deep vein thrombosis within the past 3 months.\n* Recent unhealed fracture.\n* Unhealed skin lesions (wounds, pressure sores, eczema).\n* Contagious or progressive diseases.\n* Recent cancer (less than 5 years).\n* Ongoing or recent (within the past month) pulmonary or ENT exacerbation at inclusion.\n* Ongoing treatment with immunomodulatory or immunosuppressive drugs (due to the risk of potentially severe opportunistic infections).\n* Ongoing or recent (within the past month) extra-respiratory or ENT infectious flare-up.\n* Positive pre-cure bacteriological testing for multidrug-resistant Pseudomonas aeruginosa, MRSA, Mycobacterium abscessus, or other multidrug-resistant pathogenic bacteria.\n* Fever \\> 38.5°C.\n* Recently worsened dyspnea (\\\u003C 1 month).\n* History of serious adverse effects or intolerance during a previous thermal spa treatment.\n* Participation in another clinical trial with an exclusion period.\n* Considered a vulnerable person, as defined by Articles L1121-5 to L1121-8 of the French Public Health Code:\n\nPregnant women, women in labor, and breastfeeding mothers.\n\nIndividuals deprived of liberty by judicial or administrative decision, or those hospitalized without consent under Articles L.3212-1 and L.3213-1 (excluding Article L.1121-8), and persons admitted to a healthcare or social institution for reasons other than research.\n\nAdults under legal protection or unable to give informed consent.",{"count":273,"type":21},35,[24],"The goal of this clinical trial is to evaluate whether a 3-week thermal spa treatment can improve quality of life and reduce ENT (ear, nose, and throat) symptoms in adults with Primary Ciliary Dyskinesia (PCD). PCD is a rare, chronic condition that affects the airways and often leads to persistent sinus, ear, and lung infections.\n\nThe main questions the study aims to answer are:\n\nDoes spa therapy improve ENT-related symptoms and daily quality of life?\n\nDoes it help reduce the frequency of infections and the need for antibiotics?\n\nAre there improvements in hearing and lung function?\n\nIn this study, participants will be randomly assigned to one of two groups:\n\nGroup A will begin with a 3-week spa treatment, followed by regular checkups for 6 months.\n\nGroup B will start with standard care for 6 months, then receive the spa treatment and follow-up evaluations for another 6 months.\n\nAll participants will:\n\nUndergo ENT and lung function evaluations (questionnaires, hearing tests, nasal swabs, spirometry)\n\nVisit one of two spa centers for a 3-week treatment period (without hospital stay)\n\nBe followed regularly over several months for checkups and tests\n\nResearchers will compare participants' symptoms and test results before and after the spa treatment to determine its benefits.\n\nPotential benefits:\n\nParticipants may experience relief from nasal symptoms, fewer respiratory infections, improved hearing and breathing, and an overall better quality of life.\n\nPotential risks:\n\nThere is a small risk of infection from a new germ or a mild, short-term flare-up of chronic symptoms (called a \"thermal reaction\") that can occur during spa therapy.",[27],"2025-06-12",{"date":279,"type":41},"2025-06-19",{"date":281,"type":21},"2025-09-05",{"date":283,"type":21},"2027-05-05",{"name":285,"class":48},"Association Francaise pour la Recherche Thermale",{"id":287,"slug":288,"hasResults":11,"nctId":289,"briefTitle":290,"officialTitle":290,"acronym":4,"eligibilityCriteria":291,"healthyVolunteers":11,"sex":17,"minAge":227,"maxAge":292,"enrollmentInfo":293,"targetDuration":4,"studyType":61,"phases":4,"briefSummary":295,"conditions":296,"keywords":297,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":300,"lastUpdatePostDateStruct":301,"startDateStruct":303,"completionDateStruct":305,"leadSponsor":307,"locationsCount":49},"100461314","use-of-nasal-nitric-oxide-testing-in-improving-primary-ciliary-dyskinesia-clinical-care-100461314","NCT05287022","Use of Nasal Nitric Oxide Testing in Improving Primary Ciliary Dyskinesia Clinical Care","Inclusion Criteria:\n\n* Individuals who are diagnosed with Primary Ciliary Dyskinesia OR\n* Individuals with abnormal PCD diagnostics (abnormal ciliary biopsy or PCD genetics) OR\n* Individuals with unexplained bronchiectasis OR\n* Individuals undergoing PCD diagnostic testing (ciliary biopsy, PCD genetic testing) or concern based on clinical symptoms (at least two of the following):\n\n  * Neonatal respiratory distress\n  * Organ laterality defects\n  * Year-round cough starting in first year of life or bronchiectasis on chest CT\n  * Year-round nasal congestion starting in first year of life or pansinusitis\n  * Multiple ear infections in the first two years of life with sequelae (e.g. ear tubes, chronic effusion, abnormal audiological exam)\n  * History of recurrent pneumonias (at least 2 in one year or more than 3 at any time)\n* Ability to provide consent for participation in study by the participants or guardian\n* Ability to perform the test\n* Age \\>= 2 years of age\n\nExclusion Criteria:\n\n* Individuals who are unable to understand the requirements of the study.\n* Individuals (or guardians) who are unwilling to provide consent.\n* Individuals who are unable to complete the testing\n* Recent history of sinus surgery (within four weeks) or bloody nose (within one week) of testing (they can be included at a later date)\n* Patients who are currently being treated (within one week) with antibiotics for sinusitis or respiratory symptoms (they can be included at a later date)\n* Age \\\u003C2 years of age","99 Years",{"count":294,"type":21},150,"this study is aiming at learning more about primary ciliary dyskinesia (PCD) and tests that are used to diagnose this condition. One purpose of this study is to measure the level of nitric oxide in the nasal passages and examine how often the results correlate with other tests currently done to make the diagnosis.",[27],[298,299,28],"nNO","Diagnosis","2025-01-28",{"date":302,"type":41},"2025-01-30",{"date":304,"type":41},"2021-06-14",{"date":306,"type":21},"2030-06",{"name":308,"class":48},"Arkansas Children's Hospital Research Institute",{"id":310,"slug":311,"hasResults":11,"nctId":312,"briefTitle":313,"officialTitle":314,"acronym":4,"eligibilityCriteria":315,"healthyVolunteers":11,"sex":17,"minAge":117,"maxAge":316,"enrollmentInfo":317,"targetDuration":4,"studyType":22,"phases":319,"briefSummary":320,"conditions":321,"keywords":322,"overallStatus":76,"whyStopped":4,"lastUpdateSubmitDate":325,"lastUpdatePostDateStruct":326,"startDateStruct":328,"completionDateStruct":330,"leadSponsor":332,"locationsCount":49},"100203782","chest-physiotherapy-and-lung-function-in-primary-ciliary-dyskinesia-100203782","NCT01929356","Chest Physiotherapy and Lung Function in Primary Ciliary Dyskinesia","The Influence of Chest Physiotherapy on Lung Function Parameters in Primary Ciliary Dyskinesia","Inclusion Criteria:\n\n* Primary ciliary dyskinesia\n* able to perform spirometry and MBW (\\>6 years)\n\nExclusion Criteria:\n\n* acute exacerbation","50 Years",{"count":318,"type":21},29,[24],"Primary ciliary dyskinesia (PCD) is a rare disease, caused by impairment of the motile cilia. Patients present with chronic upper and lower respiratory tract infections. The therapy is mainly supportive and based on that of cystic fibrosis. Chest physiotherapy is one of the cornerstones of the therapy, however the influence of chest physiotherapy on lung function (short term and long term) is not clear. For interpretation of longitudinal lung function data it is important to examine the short time effect of chest physiotherapy. We hypothesize that a session of chest physiotherapy improves lung function and that thus lung function tests must be performed in a standardized way.",[27],[323,324],"lung function tests","chest physiotherapy","2024-07-01",{"date":327,"type":41},"2024-07-03",{"date":329,"type":41},"2020-06-30",{"date":331,"type":21},"2025-11",{"name":333,"class":48},"Universitaire Ziekenhuizen KU Leuven",{"id":335,"slug":336,"hasResults":11,"nctId":337,"briefTitle":338,"officialTitle":339,"acronym":4,"eligibilityCriteria":340,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":18,"enrollmentInfo":341,"targetDuration":4,"studyType":61,"phases":4,"briefSummary":343,"conditions":344,"keywords":345,"overallStatus":37,"whyStopped":4,"lastUpdateSubmitDate":347,"lastUpdatePostDateStruct":348,"startDateStruct":350,"completionDateStruct":352,"leadSponsor":354,"locationsCount":4},"100263113","registry-study-on-primary-ciliary-dyskinesia-in-chinese-children-100263113","NCT02704455","Registry Study on Primary Ciliary Dyskinesia in Chinese Children","Registry Study on Primary Ciliary Dyskinesia in Chinese children-a Multicenter, Prospective Cohort Study","Inclusion Criteria: A included patient must be coincident with all the following items:\n\n* Age 0\\~18 years old\n* Any organ system symptoms consistent with PCD and being conform to the clinical diagnostic standard of Katergener syndrome or being coincident with at least two following specific tests:\n* Abnormal ciliary beat frequency or movement by the high speed photography microscope\n* Abnormal ciliary structure through the electronic microscopy\n* The nasal NO decreased significantly\n* The target gene mutation found\n* The clinical diagnostic criteria of the Katergener syndrome: ① bronchial expansion; ② sinusitis or nasal polyps; ③ transposition of viscera and (or) dextrocardia.\n* If all the typical clinical manifestations but only 1 specific test with positive results, can also be included in the registration of suspected PCD cases\n* Consent to provide the related clinical specimen to the certain hospital\n* The guardians of the patients fully understand the purpose of the study, volunteer their children to participate in this study, and sign informed consent.\n\nExclusion Criteria: Subject will be excluded if she or he has one of the following:\n\n* It is unable to provide complete medical records or the current condition can not accept the diagnosis process\n* She or he cannot agree to participate in the study.",{"count":342,"type":21},100,"This study is a multicenter, prospective cohort study of patients diagnosed with primary ciliary dyskinesia, the clinical information of recruited patients, including clinical manifestations, lung function, chest imaging, quality of life and other indicators, will be followed for 10 years.",[27],[346],"children","2016-03-05",{"date":349,"type":21},"2016-03-10",{"date":351,"type":4},"2016-05",{"date":353,"type":21},"2030-07",{"name":355,"class":48},"Beijing Children's Hospital"]