Letter on Alport Syndrome

Alport syndrome registries have been established in several countries. Two of the largest Alport syndrome registries are in USA. Registries have also been established in the Europe, United Kingdom, France, Italy, Australia, China and other countries. A registry is a special database that contains information about individuals with a specific disorder or group of conditions. The collection of data about rare disorders may enable researchers to increase the understanding of disorders, treatments, and accelerate clinical trials in specific treatment. Medical practitioners are encouraged to submit data to treat patients with Alport syndrome.