[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"thin-basement-membrane-disease\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:thin-basement-membrane-disease":26},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,50],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":18,"targetDuration":21,"studyType":22,"phases":4,"briefSummary":23,"conditions":24,"keywords":28,"overallStatus":37,"whyStopped":4,"lastUpdateSubmitDate":38,"lastUpdatePostDateStruct":39,"startDateStruct":42,"completionDateStruct":44,"leadSponsor":46,"locationsCount":49},"100556564","asf-alport-patient-registry-100556564",false,"NCT06526741","ASF Alport Patient Registry","Alport Syndrome Foundation Alport Patient Registry","Inclusion Criteria:\n\n1. Confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician or nephrologist.\n2. Signed informed consent\u002Fassent must be provided by the subject and\u002For caregiver (parent\u002Flegal guardian) including compliance with the restrictions listed in the informed consent\u002Fassent form and in the study protocol. (Separate age-appropriate assent forms are provided for ages 7-12 years and ages 13-17 years.)\n3. Must reside in the USA or US territories and outlying islands. (This criterium may change at an as-yet undetermined future date.)\n\nExclusion Criteria:\n\n\\[none\\]","ALL","0 Years",{"count":19,"type":20},2500,"ESTIMATED","90 Days","OBSERVATIONAL","Alport Syndrome Foundation's (ASF's) Alport Patient Registry (the Registry) is open to individuals living with Alport syndrome in the United States (US) and US territories and outlying islands. The Registry welcomes participants of all ages who have a confirmed clinical diagnosis of Alport syndrome. A confirmed diagnosis could be obtained via genetic testing, biopsy, and\u002For from a medical professional's clinical assessment of the individual's symptoms and\u002For family history. Participants can have any form and stage of this disease to be eligible for inclusion in the Registry.\n\nPatient participation in the Registry is crucial to helping attract and advance research, understanding understudied aspects of the disease, and informing clinical trials that may lead to Alport syndrome therapies and\u002For a cure.\n\nThe Registry is accessed through a secure, online application. Participants report their own health history in the Registry and are encouraged to update any changes, at most, every three months.\n\nThe security of each participant's information is a top priority. Any detail that could identify an individual participant is kept confidential in the Registry and such data are de-identified to protect the participant's privacy. No electronic health records or social security numbers are requested by or connected to the Registry.\n\nA parent or legal guardian may consent to enroll a child\u002Fdren Alport patient(s) under the age of 18 years. An additional assent form is used for individuals ages 7-17. At age 18, participants will be required to re-consent as an adult if they choose to continue to participate in the Registry.",[25,26,27],"Alport Syndrome","Thin Basement Membrane Disease","Hereditary Nephritis",[29,30,31,32,33,34,35,36],"Alport","COL4A3","COL4A4","COL4A5","Collagen Type-IV","Glomerulonephropathy","Glomerulosclerosis","Genetic Kidney Disease","RECRUITING","2026-04-09",{"date":40,"type":41},"2026-04-14","ACTUAL",{"date":43,"type":41},"2023-08-24",{"date":45,"type":20},"2048-08-23",{"name":47,"class":48},"Alport Syndrome Foundation","OTHER",1,{"id":51,"slug":52,"hasResults":11,"nctId":53,"briefTitle":54,"officialTitle":55,"acronym":56,"eligibilityCriteria":57,"healthyVolunteers":58,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":59,"targetDuration":61,"studyType":22,"phases":4,"briefSummary":62,"conditions":63,"keywords":67,"overallStatus":37,"whyStopped":4,"lastUpdateSubmitDate":71,"lastUpdatePostDateStruct":72,"startDateStruct":74,"completionDateStruct":76,"leadSponsor":78,"locationsCount":49},"100238186","alport-therapy-registry---european-initiative-towards-delaying-renal-failure-in-alport-syndrome-100238186","NCT02378805","Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome","European Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome: Current and Novel Therapies","Alport-XXL","Inclusion Criteria:\n\nDiagnosis of Alport syndrome (AS) by kidney biopsy or mutation analysis (or both).\n\nAny type of genetic variant is accepted for X-linked, autosomal or digenic Alport syndrome (COL4A3, 4 or 5 genes).\n\nExclusion criteria:\n\nPatients not willing to give informed consent. Patient with suspected diagnosis, whcih cannot be confirmed.",true,{"count":60,"type":20},800,"30 Years","The hereditary type IV collagen disease Alport syndrome leads to kidney failure early in life. Currently there are no specific medications approved for treatment, however, several therapies have been evaluated preclinically and could improve outcome. For that reason, this non-interventional, observational study investigates, if medications (1) delay disease progression; (2) delay time to kidney failure; (3) improve life-expectancy compared to untreated patients (relatives). This observational study started in 2006 as an European registry. Since 2019, this registry has been expanded to \"Alport XXL\" via the International Alport Alliance as a global effort across all continents. From 2020 on to present, \"Alport XXL\" has a special focus on the outcomes of early therapy in young patients on ACE-inhibitors vs. Angiotensin-receptor blockers vs. their combination.",[25,64,65,26,66],"Hereditary Kidney Disease","Pediatric Kidney Disease","Familial Benign Hematuria",[68,69,70],"Alport syndrome","thin basement membrane disease","familial benign hematuria","2025-03-03",{"date":73,"type":41},"2025-03-06",{"date":75,"type":4},"1995-07",{"date":77,"type":20},"2036-03-01",{"name":79,"class":48},"University Hospital Goettingen"]