[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100346360":3},{"organization":4,"armGroups":7,"interventions":15,"overallOfficials":10,"centralContacts":24,"locations":33,"responsibleParty":52,"collaborators":10,"id":54,"slug":10,"hasResults":55,"nctId":56,"briefTitle":57,"officialTitle":57,"acronym":10,"eligibilityCriteria":58,"healthyVolunteers":55,"sex":59,"minAge":10,"maxAge":10,"enrollmentInfo":60,"targetDuration":63,"studyType":64,"phases":10,"briefSummary":65,"conditions":66,"keywords":69,"overallStatus":36,"whyStopped":10,"lastUpdateSubmitDate":71,"lastUpdatePostDateStruct":72,"startDateStruct":75,"completionDateStruct":77,"leadSponsor":79,"locationsCount":80},{"fullName":5,"class":6},"Masonic Cancer Center, University of Minnesota","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Adrenoleukodystrophy",null,"All patients living in the United States diagnosed with adrenoleukodystrophy, either by newborn screen, based on family history or otherwise, are eligible to participate in this study.",[13,14],"Other: Medical Record Abstraction","Other: Biospecimen Sample Collection",[16,20],{"type":6,"name":17,"description":18,"armGroupLabels":19,"otherNames":10},"Medical Record Abstraction","Collect clinical and epidemiological data through medical record abstraction and self-reported questionnaire survey semi-annually.",[9],{"type":6,"name":21,"description":22,"armGroupLabels":23,"otherNames":10},"Biospecimen Sample Collection","Collect research samples, when feasible for those diagnosed with ALD.",[9],[25,30],{"name":26,"role":27,"phone":28,"phoneExt":10,"email":29},"Ashish Gupta, MD","CONTACT","612-626-2961","gupta461@umn.edu",{"name":31,"role":27,"phone":28,"phoneExt":10,"email":32},"Paul Orchard, MD","orcha001@umn.edu",[34],{"facility":35,"status":36,"city":37,"state":38,"zip":39,"country":40,"cosmosGeoPoint":41,"geoPoint":46,"contacts":47},"Masonic Cancer Center at University of Minnesota","RECRUITING","Minneapolis","Minnesota","55455","United States",{"type":42,"coordinates":43},"Point",[44,45],-93.26384,44.97997,{"lat":45,"lon":44},[48],{"name":49,"role":27,"phone":50,"phoneExt":10,"email":51},"Phil Lacher","612-626-2977","placher@umn.edu",{"type":53,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100346360",false,"NCT03789721","Adrenoleukodystrophy National Registry Study","Inclusion Criteria\n\n* Age 0 - 100\n* ALD patients or family member meeting any of the following criteria:\n\n  * Any patient diagnosed with ALD (confirmed by positive VLCFA testing and\u002For genetic mutation).\n  * Known or presumed mutation with ALD based on pedigree or confirmed mutation in ABCD1 gene\n* Participants living in the United States and territories\n\nExclusion Criteria\n\n* Patients diagnosed with ALD who lack the capacity to consent\u002Fassent AND do not have a designated legally authorized representative or guardian.\n* Patients who have undergone BMT or other cellular therapy .\n* Patients not fluent in English who are unable to consent in-person at the BMT Journey Clinic.\n* Patients who are illiterate\n* Patient determined by the PI or designee to be unlikely to complete required study components (due to language barriers, compliance issues, etc.)","ALL",{"count":61,"type":62},1000,"ESTIMATED","99 Years","OBSERVATIONAL","The aim of this registry to understand the natural history and disease progression in ALD and potentially develop bio-markers using the biospecimens collected using this registry.",[67,9,68],"ALD (Adrenoleukodystrophy)","Cerebral Adrenoleukodystrophy",[70],"Registry, VLCFA, ABCD1, X-chromosome","2026-05-11",{"date":73,"type":74},"2026-05-12","ACTUAL",{"date":76,"type":74},"2019-05-01",{"date":78,"type":62},"2030-02",{"name":5,"class":6},1]