Japanese Alport Syndrome Patients Registry
- Conditions
- Alport syndrome
- Registration Number
- JPRN-UMIN000044307
- Lead Sponsor
- Japanese Society of Pediatric Nephrology
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- All
- Target Recruitment
- 500
Not provided
1)Patients who have declined to provide their data when opting in consent or opting out consent 2)Patients who have only heterozygous mutations in the COL4A3 or COL4A4 gene, urinary findings are only hematuria and no proteinuria, renal function is normal, and family history also shows only hematuria. * To date, the definition of basement membrane thinning syndrome has not been determined, but in this study, such cases are treated as basement membrane thinning syndrome. ** As shown in the selection criteria 2), if there is a patient in the family who has urinary protein or renal dysfunction and is diagnosed with autosomal dominant Alport syndrome, hematuria-only patients are also enrolled. If you are uncertain about your decision, consult with the research office. 3) Patients judged to be inappropriate as a target by the judgment of researchers.
Study & Design
- Study Type
- Observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Age at the start of renal replacement therapy.
- Secondary Outcome Measures
Name Time Method 1. Estimated glomerular filtration rate (eGFR) 2. Urine protein 3. Age at onset of deafness 4. Time to start renal replacement therapy 5. Time to onset of deafness