CDKL5 Community
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What is the CDKL5 Registry?
The CDKL5 Registry collects data for research and pharmaceutical development, as well as helps caregivers track their loved one’s symptoms...
Learn MoreWho Can Participate?
The CDKL5 Registry is open to the global CDKL5 community. All legal guardians - parents or caregivers - of individuals with CDKL5 Deficiency Disorder are encouraged to participate...
Learn MoreWhy Should I Register?
The CDKL5 Registry lets you track and view your loved one’s data and, once sufficient data is collected, compare it against the CDKL5 community as a whole...
Learn MoreCDKL5 Registry Research
The CDKL5 Registry aims to increase understanding of CDD symptoms and progression. It will also be used to support clinical trials of potential treatments...
Learn MoreData and Privacy
When you enroll in the CDKL5 Registry, you give permission for participating researchers, clinicians, pharmaceutical companies and other businesses to access your data. You can request your data be removed at any time ...
Learn MoreHow do I register my loved one?
It all begins when you click “Register Now.” You will be walked through the steps to create an account and provide informed consent, and then you will get access to...
Learn More
100+
Cases Worldwide
0
Scientists Working on CDD
0
Labs Worldwide Working on CDD
0
Active Clinical Trails
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