TSF is leading the charge to find a cure for Wolfram Syndrome. A major step in this fight is to assemble an international patient registry that will help with the funding and drug development process. TSF’s patient registry will be used prospectively to quickly identify patients eligible for a clinical trial, or retrospectively to analyze the effectiveness of an intervention. A foundation patient registry will also help patients receive more accurate advice and improve care pathways, which can lead to improved care and life expectancy, even in the absence of a cure.
This registry may also serve as a way for patients and families to connect with each other, as emotional support is an important part of the healing and treatment process. TSF will be contacting families shortly.