The first project I took on, when I began working at FARA, was creating the FA Patient Registry. At the time, there was no database to store patient information, so we began from scratch assembling the perfect prototype to hold this information. We recruited a team of IT volunteers from Electronic Data Systems and students from the Rochester Institute of Technology, and they custom built the registry platform. We opened that registry to the FA community in 2005.
For me, the patient registry is a fantastic resource for several reasons. It has allowed us to better understand the prevalence of FA in geographic areas, ensured 100% recruitment and enrollment in clinical trials and clinical research studies, and is a primary resource in bringing us together as a global community.
Why did we switch to the new registry?
The original registry platform served us amazingly well for 14 years. In 2019, we thought it was best to update our registry model to better accommodate everyone in the FA community. From the global perspective, we needed a platform that was compliant with new privacy rules and ensured data security, that aligned with present day technology. We also wanted a system that was able to handle foreign language translation, as well as a platform with more research capabilities.
This new system will allow us to easily upload surveys from physicians in our network and quickly alert the patient community to these opportunites. I believe the new registry is a more robust research tool with more analytic capabilities. In the future, we will be able to conduct research directly through the registry.
As of today, we have > 715 patients registered, representing 40 countries. There are an estimated 15,000 FA patients worldwide. This registry is for people diagnosed with Friedreich's ataxia. Parents of minors diagnosed with FA can register an account on behalf of their children. It is important that we have your current contact information. So, if you have not already set up your account in the new registry, we invite you to join. Together, we will cure FA!