[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100244533":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":12,"centralContacts":16,"locations":22,"responsibleParty":39,"collaborators":41,"id":50,"slug":10,"hasResults":51,"nctId":52,"briefTitle":53,"officialTitle":53,"acronym":10,"eligibilityCriteria":54,"healthyVolunteers":51,"sex":55,"minAge":10,"maxAge":10,"enrollmentInfo":56,"targetDuration":59,"studyType":60,"phases":10,"briefSummary":61,"conditions":62,"keywords":64,"overallStatus":25,"whyStopped":10,"lastUpdateSubmitDate":68,"lastUpdatePostDateStruct":69,"startDateStruct":72,"completionDateStruct":74,"leadSponsor":76,"locationsCount":77},{"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,"cosmosGeoPoint":30,"geoPoint":35,"contacts":36},"Cincinnati Children's Hospital Medical Center","RECRUITING","Cincinnati","Ohio","45229","United States",{"type":31,"coordinates":32},"Point",[33,34],-84.51439,39.12711,{"lat":34,"lon":33},[37],{"name":38,"role":19,"phone":20,"phoneExt":10,"email":21},"Brenna C Carey, MS, PhD",{"type":40,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[42,45,48],{"name":43,"class":44},"Rare Diseases Clinical Research Network","NETWORK",{"name":46,"class":47},"National Heart, Lung, and Blood Institute (NHLBI)","NIH",{"name":49,"class":47},"National Center for Advancing Translational Sciences (NCATS)","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":57,"type":58},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",[63],"Pulmonary Alveolar Proteinosis",[65,66,67],"Pulmonary Surfactant","Rare Lung Disease","Registry","2026-03-16",{"date":70,"type":71},"2026-03-17","ACTUAL",{"date":73,"type":10},"2015-04",{"date":75,"type":58},"2030-12",{"name":5,"class":6},1]