Why join the CDKL5 program?
Reduce the time for CDKL5 deficiency disorder drug development
All your medical data in one place
Follow new clinical trials
Make your de-identified health information part of multiple research projects
Our work with CDKL5 research
CDKL5 is an X-linked genetic disorder characterized by seizures that begin in infancy. It results in severe developmental delays.
CDKL5 deficiency disorder usually begins within the first 3 months of life, and can appear as early as the first week after birth. Seizures occur daily in most affected people.
Most children with CDKL5 have severe intellectual disability and little or no speech. There is no current targeted treatment or gene therapy for CDKL5 disorder, it is managed primarily through different forms of therapy.
The latest on our research: We are jumpstarting our CDKL5 program to accelerate research on the disorder and welcome all parents interested in participating and spreading the word to the CDKL5 community.
How it works
1. Sign up
Create your private account and review our research consent (takes about 10 minutes)
2. We get to work
We do all the behind-the-scenes work to retrieve and process your records
3. Empower research
Track your contribution to research projects and, based on your records, find out if you qualify for new clinical trials based on your records
Our values & principles.
We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.
We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.
We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.
Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.