IFCR & RDMD Partner to Accelerate Drug Development

You can accelerate drug development in CDKL5

Important research records are trapped in hospitals across the country. As a result, drug researchers can’t access the information they need to advance treatments.

But as a patient caregiver, you can. Unlock your records and contribute them to research, privately and securely.


RDMD is jumpstarting its CDKL5 program to accelerate research on CDKL5 deficiency disorder and welcome all parents interested in participating. To do this, you will need to take 10 minutes to register at this link and provide your contact information, list out hospitals or doctors you’ve visited, and give RDMD permission to retrieve your health information.

In return, you will get a convenient dashboard to access your loved one’s complete set of medical records that are updated annually. You will also receive updates when the history is utilized for research. You can download your loved one’s information, share it, or delete it whenever you want. You decide what happens with their information.

The caregivers of patients who have passed away are also able to sign up so that their medical records can be included in the research. The policies around how long medical records of deceased patients are retained vary among hospitals and health systems, with the average being between 5–10 years, according to the RDMD operations team. We appreciate the caregivers who honor their loved ones by helping to advance research in their condition.

*This program is now available to US & Canadian citizens and will be expanding to Europe.

Learn more about RDMD

Additional Details Available – FAQs

Join the CDKL5 RDMD Program