[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100244533":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":12,"centralContacts":16,"locations":22,"responsibleParty":40,"collaborators":42,"id":51,"slug":52,"hasResults":53,"nctId":54,"briefTitle":55,"officialTitle":55,"acronym":10,"eligibilityCriteria":56,"healthyVolunteers":53,"sex":57,"minAge":10,"maxAge":10,"enrollmentInfo":58,"targetDuration":61,"studyType":62,"phases":10,"briefSummary":63,"conditions":64,"keywords":66,"overallStatus":25,"whyStopped":10,"lastUpdateSubmitDate":70,"lastUpdatePostDateStruct":71,"startDateStruct":74,"completionDateStruct":76,"leadSponsor":78,"locationsCount":79},{"fullName":5,"class":6},"Children's Hospital Medical Center, Cincinnati","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":10},"Registry Participants",null,"All participants who participate in the National PAP Registry will be put into this cohort and observed over approximately 5 years.",[13],{"name":14,"affiliation":5,"role":15},"Bruce C Trapnell, MD","STUDY_CHAIR",[17],{"name":18,"role":19,"phone":20,"phoneExt":10,"email":21},"Brenna C Carey, Ms, PhD","CONTACT","513-636-8916","Brenna.Carey@cchmc.org",[23],{"facility":24,"status":25,"city":26,"state":27,"zip":28,"country":29,"countryCode":30,"cosmosGeoPoint":31,"geoPoint":36,"contacts":37},"Cincinnati Children's Hospital Medical Center","RECRUITING","Cincinnati","Ohio","45229","United States","US",{"type":32,"coordinates":33},"Point",[34,35],-84.51439,39.12711,{"lat":35,"lon":34},[38],{"name":39,"role":19,"phone":20,"phoneExt":10,"email":21},"Brenna C Carey, MS, PhD",{"type":41,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[43,46,49],{"name":44,"class":45},"Rare Diseases Clinical Research Network","NETWORK",{"name":47,"class":48},"National Heart, Lung, and Blood Institute (NHLBI)","NIH",{"name":50,"class":48},"National Center for Advancing Translational Sciences (NCATS)","100244533","a-national-registry-for-pulmonary-alveolar-proteinosis-100244533",false,"NCT02461615","A National Registry For Pulmonary Alveolar Proteinosis","Inclusion Criteria for Part A and Part B:\n\n* Written informed consent and assent, if applicable\n\nInclusion Criteria for Part A (Cross Sectional Study of PAP Syndrome)\n\n* History of chest computed tomogram or chest radiograph findings compatible with PAP\n* History of diagnosis of PAP made by at least one of the following methods:\n\n  * Positive (Abnormal) serum GMAb test -OR-\n  * Lung biopsy clearly documenting the presence of PAP of any type or degree -OR-\n  * Bronchoalveolar lavage cytology compatible with PAP -OR-\n  * Recessive or compound mutations in genes known to cause PAP, i.e. GM-CSF receptor α or β chain, GM-CSF, surfactant protein B or C or ABCA3, ABCG1, ABCA1, TTF1\n\nInclusion Criteria For Part B (Longitudinal \\& PRO Survey Study of autoimmune PAP Patients)\n\n* Diagnosis of autoimmune PAP as indicated by:\n\n  * Positive (Abnormal) Serum GMAb Test -AND-\n  * History of chest CT or x-rays findings compatible with PAP -OR-\n  * Lung biopsy clearly documenting the presence of PAP of any type or degree -OR-\n  * Bronchoalveolar lavage cytology compatible with PAP\n\nExclusion Criteria or Part A and Part B:\n\n* Individuals who have a serious medical illness that, in the opinion of the investigator, is likely to interfere with completion of the study will be excluded.\n\nFor Part A (Cross-sectional Study of PAP Syndrome)\n\n* Individuals that do not have a diagnosis of PAP\n\nFor Part B (Longitudinal \\& PRO Survey Study of autoimmune PAP Patients)\n\n* Individuals that do not have a diagnosis of autoimmune PAP","ALL",{"count":59,"type":60},500,"ESTIMATED","5 Years","OBSERVATIONAL","The major goal of Part A of this study is to establish a National PAP Registry to help make reliable new research tests available to doctors to improve the diagnosis of PAP, increase awareness and knowledge of PAP, and give patients a 'seat at the table' in planning and conducting PAP research including the clinical testing of several new potential therapies. The major goal of Part B of this study is to define the natural history of autoimmune PAP (aPAP), develop a disease severity score that reflects how aPAP patients feel and function, and to develop and test novel tools to measure the severity of aPAP lung disease. Funding Source - FDA OOPD",[65],"Pulmonary Alveolar Proteinosis",[67,68,69],"Pulmonary Surfactant","Rare Lung Disease","Registry","2026-03-16",{"date":72,"type":73},"2026-03-17","ACTUAL",{"date":75,"type":10},"2015-04",{"date":77,"type":60},"2030-12",{"name":5,"class":6},1]