Registry for patients with Alport syndrome
Official title: Alport Syndrome Foundation Alport Patient Registry
Run by Alport Syndrome Foundation · NCT06526741 · Data updated 2026-11-12
This study is creating a registry for people with Alport syndrome to share their health information, which will help researchers learn more about the condition and develop new treatments.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 0 Years and up |
| Sex | All |
| Enrollment | 2500 (estimated) |
| Sponsor | Alport Syndrome Foundation Academic / other |
| Locations | 1 site (Scottsdale, Arizona) |
| Status | Recruiting |
| Started | August 24, 2023 |
| Main results expected | August 23, 2048 |
| Study ends | August 23, 2048 |
| Registry record updated | April 14, 2026 |
| Trial ID | NCT06526741 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals of any age with a confirmed diagnosis of Alport syndrome.
✕Probably not a fit
Patients without a confirmed diagnosis of Alport syndrome or those residing outside the USA and its territories may not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The Alport Patient Registry, created by the Alport Syndrome Foundation in collaboration with Pulse Infoframe Inc., is an observational registry open to individuals diagnosed with Alport syndrome in the United States and its territories. Participants of all ages can join by providing a confirmed diagnosis through genetic testing, biopsy, or clinical assessment. The registry allows patients to report and update their health history, which is crucial for advancing research and informing future clinical trials aimed at developing therapies for Alport syndrome. The data collected will help in understanding the disease better and potentially lead to new treatment options.
Why it matters
Potential benefit: If successful, this registry could enhance research efforts and lead to the development of effective therapies for Alport syndrome.
How similar studies have gone: Other patient registries for genetic diseases have shown success in advancing research and treatment options, indicating a positive outlook for this approach.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician or nephrologist. 2. Signed informed consent/assent must be provided by the subject and/or caregiver (parent/legal guardian) including compliance with the restrictions listed in the informed consent/assent form and in the study protocol. (Separate age-appropriate assent forms are provided for ages 7-12 years and ages 13-17 years.) 3. Must reside in the USA or US territories and outlying islands. (This criterium may change at an as-yet undetermined future date.) Exclusion Criteria: \[none\]
Where it's running
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On-line only: https://asfalportpatientregistry.healthie.net
Scottsdale, Arizona, United States Recruiting
Study contacts
- Principal investigator: Makabe Aberle, BS — Alport Syndrome Foundation
- Study coordinator: Makabe Aberle, BS
- Email: kaberle@alportsyndrome.org
- Phone: 4808003510
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Registry for delaying kidney failure in Alport syndrome
This study is collecting information from patients with Alport syndrome to see if different medications can help delay kidney failure and improve their quality of life.
-
Periodontal Health in Rare Kidney Conditions and Controls
This study tests how common periodontitis is in people with rare kidney disorders and compares it to CKD patients and people without kidney disease.
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National Registry for Rare Kidney Diseases
This study is collecting health information from people with rare kidney diseases to help improve treatments and create better care guidelines.
-
Observational study on Alport Syndrome
This study is looking at how Alport syndrome affects people over time and whether new treatments that worked in animals can help improve their health and quality of life.
-
Treatment of pediatric kidney diseases with Sparsentan
This study is testing if a new oral medication called Sparsentan can help children aged 1 to 18 with certain kidney diseases feel better and improve their condition over two years.
-
Understanding genetic factors in Alport Syndrome
This study is trying to see how certain gene changes in families with Alport syndrome affect kidney problems and hearing loss.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.