You can accelerate drug development in CDKL5

(CDKL5 deficiency disorder)

Your experience with CDKL5 is important and can help researchers advance treatments for your community.

By joining RDMD, you can contribute your de-identified medical records to multiple research efforts for CDKL5 without leaving home. We do the work to collect your information, and you’ll receive all your records in your secure account, at no cost.

Questions? Check out our FAQ
Join the CDKL5 program in 10 minutes
0/30 research participants

Help this community hit the research goal by sharing with your network!
Mens Health Magazine
Mens Health Magazine

Who’s involved?

International Foundation for CDKL5 Research
International Foundation for CDKL5 Research
RDMD Research for CDKL5 is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation.Read more.

Why join the CDKL5 program?

Key benefits for you:

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

Your dashboard
Your dashboard

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.

  • Jumpstart
  • Accelerate
  • Insights

The CDKL5 program is in the jumpstart stage.

Be part of research

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Empower research

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

Be part of research

Questions? Check out our FAQ

Our values & principles.

Patients own their data

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 protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

Researchers gain access

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.

Inclusiveness in the community

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.

Driving forward therapeutic development

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.