Make Your Voice Heard
When someone you love is affected by CDKL5 Deficiency Disorder, you want to know about every scientific advance and clinical trial that could help them.
Yet, pharmaceutical companies and researchers are not in the habit of reaching out to families. Especially when the illness involved is a rare disease like CDD.
Strength in Numbers
That is why the IFCR encourages you to participate in our Connect CDKL5 Deficiency Disorder Registry. When we band together, we are best able to advocate for our loved ones.
The IFCR Connect CDKL5 Registry gives us a seat at the table with pharmaceutical companies, clinicians and researchers. They want data – and the Registry means we can provide it to them. For instance, if they need a focus group of families affected by CDD in a specific region, the Registry makes it possible to connect them. If they need demographic data on a specific mutation, the Registry makes it possible to provide it.
As a participant, you will receive updates on the latest research findings. You will also receive opportunities to participate in:
- Specialized surveys and focus groups
- CDKL5 Centers of Excellence research
- Regional CDD studies
We take your privacy seriously. We invite you to learn more about the IFCR CDKL5 Registry’s privacy protections and data protections.
Sign Up for the IFCR Connect CDKL5 Registry
There is no fee to participate and you will be working to make CDKL5 families heard. Here is a snapshot of what you are agreeing to when you participate in Connect CDKL5.