Abstract: INFO07-SA
Alport Syndrome Foundation Alport Patient Registry
Session Information
- Informational Posters - 3
November 08, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- No subcategory defined
Authors
- Weinstock, B. Andre, Alport Syndrome Foundation, Phoenix, Arizona, United States
- Henderson, Joshua, Pulse Infoframe, London, Ontario, Canada
- Bonebrake, Lisa, Alport Syndrome Foundation, Phoenix, Arizona, United States
- Warady, Bradley A., Children's Mercy Kansas City, Kansas City, Missouri, United States
- Gwadry-Sridhar, Femida, Pulse Infoframe, London, Ontario, Canada
Description
The ASF (Alport Syndrome Foundation) Alport Patient Registry is an IRB-approved, decentralized, ambispective, longitudinal natural history study launched in August 2023 and is open to all Alport syndrome patients with a confirmed diagnosis. Currently, this registry is open to Alport syndrome patients in the United States. In this poster we highlight some of the unique attributes of the registry which make it an important tool for clinical and fundamental research in Alport syndrome. Also shown are improvements and additions made in the last year such as a retrospective data entry tool and addition of hematuria and cystatin-C metrics.
Funding
- Alport Syndrome Foundation