[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100346360":3},{"organization":4,"armGroups":7,"interventions":15,"overallOfficials":10,"centralContacts":24,"locations":33,"responsibleParty":53,"collaborators":10,"id":55,"slug":56,"hasResults":57,"nctId":58,"briefTitle":59,"officialTitle":59,"acronym":10,"eligibilityCriteria":60,"healthyVolunteers":57,"sex":61,"minAge":10,"maxAge":10,"enrollmentInfo":62,"targetDuration":65,"studyType":66,"phases":10,"briefSummary":67,"conditions":68,"keywords":71,"overallStatus":36,"whyStopped":10,"lastUpdateSubmitDate":73,"lastUpdatePostDateStruct":74,"startDateStruct":77,"completionDateStruct":79,"leadSponsor":81,"locationsCount":82},{"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,"countryCode":41,"cosmosGeoPoint":42,"geoPoint":47,"contacts":48},"Masonic Cancer Center at University of Minnesota","RECRUITING","Minneapolis","Minnesota","55455","United States","US",{"type":43,"coordinates":44},"Point",[45,46],-93.26384,44.97997,{"lat":46,"lon":45},[49],{"name":50,"role":27,"phone":51,"phoneExt":10,"email":52},"Phil Lacher","612-626-2977","placher@umn.edu",{"type":54,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100346360","adrenoleukodystrophy-national-registry-study-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":63,"type":64},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.",[69,9,70],"ALD (Adrenoleukodystrophy)","Cerebral Adrenoleukodystrophy",[72],"Registry, VLCFA, ABCD1, X-chromosome","2026-05-11",{"date":75,"type":76},"2026-05-12","ACTUAL",{"date":78,"type":76},"2019-05-01",{"date":80,"type":64},"2030-02",{"name":5,"class":6},1]