Alport Syndrome Foundation Alport Patient Registry

What this Trial Is About

Researchers are gathering information from individuals of all ages living with Alport syndrome and related kidney diseases in the United States and its territories. This registry study aims to better understand the genetic and clinical diversity of Alport syndrome, a genetic condition affecting the kidneys, ears, eyes, and other organs due to changes in specific collagen genes. The goal is to collect detailed patient data to help improve future research, clinical trials, and potential treatments for this complex disease. Participants join an online registry where they provide their health history and updates about their condition regularly, up to every three months. The registry is non-interventional, meaning no treatments or medications are given as part of the study. Instead, it collects real-world health information over time from patients diagnosed by healthcare professionals through genetic testing, biopsies, or clinical assessments. During the study, participants report their medical history and any changes through a secure online system that protects their privacy by keeping personal data confidential and de-identified. Parents or guardians can enroll children under 18, with age-appropriate consent and assent processes. The main measure of success is the total number of enrolled participants over five years, helping researchers gain insight into Alport syndrome's progression and treatment patterns.

ASF Alport Patient Registry