Who do you think are the world’s leading experts on Rett Syndrome? Geneticists? Neuroscientists? Neurologists?
You’re right. They’re all experts. But there’s one group of very important experts that may not come to mind right away — YOU! Parents and caregivers are most assuredly experts on Rett Syndrome, and in particular, they’re experts on their own children. No one knows your child’s symptoms, challenges, strengths, subtleties, and routines better than you.
What’s remarkable is that all of this information that you carry around every day is incredibly valuable, and if tapped into correctly can be utilized by clinicians, biopharma companies and scientists working on Rett Syndrome. Unfortunately, right now, they simply don’t have access to this untapped resource.
Imagine if clinicians had access to a database that stored all of that valuable information. Imagine if it was an interactive, searchable, sortable database that allowed clinicians to see patterns and frequencies in symptoms or skills from patients all over the country and all over the world, and could use that collective information to develop more powerful symptom management techniques and tools. Imagine if biopharma companies also had access and could use the data to create outcome measure tools that detect improvements in symptoms and skills that mattered most to patients and their families thereby making clinical trials more effective and efficient. Imagine if the database could be used to answer existing research questions and ask new questions of this coalition of Rett citizen researchers.
Now imagine if you could track and graph your child’s symptoms, therapies and skills gaining insight into correlations and trends. Imagine if you had access to review and update this information from your smart phone or any hand-held mobile device. Imagine being able to share with clinicians actual data about how your child has been doing rather than trying to summarize what you remember. And now imagine sharing your child’s information, anonymously, with fellow Rett parents around the globe, exponentially growing our collective knowledge base and potentially improving all of our children’s care.
You can stop imagining. In late 2021 we’ll be launching the The Rett Syndrome Global Registry which can do all of this and more. A parent/caregiver-driven registry for Rett Syndrome that will tap into your valuable day-to-day experience with Rett, provide you with new and unique tools to manage your child’s needs, while advancing research and therapeutic development. A win-win for everyone!
To realize all of the potential benefits of the registry we need you to participate.
A Call to Action—We Need You
We are looking for families to join our Registry Pioneer program, which will allow you to get a sneak peek at the registry and enter data before the launch. The Pioneer program will allow the registry to launch with a foundational dataset and be of immediate use. From there the registry will grow in value with each new family that registers and contributes their important information and experience.
Please register below to become a Registry Pioneer and we will contact you with more information and updates on progress.