Help Our Researchers

CDKL5 Clinical Research & Trials

Learn about new drugs under development and other current CDKL5 clinical research.

CDKL5 Registry Alliance

The IFCR’s Connect CDKL5 platform is one of three platforms worldwide that research CDKL5 Deficiency Disorder, including:

The International CDKL5 Disorder Database (ICDD) is an ongoing research database which has used data provided by caregivers to inform multiple publications in the scientific and medical literature since 2012. The ICDD is managed by researchers at Telethon Kids Institute, an independent non-profit research organization affiliated with the University of Western Australia and co-located with the Perth Children’s Hospital. Families will also be able to provide consent for data that they have submitted to the CDKL5 Registry to be accessed by the ICDD.

The CDKL5 Registry collects data for research and pharmaceutical development, as well as helps caregivers track their loved one’s symptoms. With patient consent, the CDKL5 Registry also advances scientific knowledge by sharing de-identified (anonymous) data with researchers around the world. The CDKL5 Registry also offers families the opportunity to learn about and participate in CDKL5 clinical studies, including drug trials. The CDKL5 Registry is a joint effort funded and supported by the LouLou Foundation and the Orphan Disease Center at the University of Pennsylvania’s Perelman School of Medicine

We invite all caregivers to enroll in each of these three groups. By working together, we help further research and advocacy efforts for all those affected by CDKL5 Deficiency Disorder.

CDKL5 Natural History Studies

Help us accelerate drug development by sharing access to your medical records. 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, you can. Unlock your records and contribute them to research, privately and securely. Learn more about how we are partnering with Allstripes (formerly RDMD) while providing a tool to download your loved one’s information, share it, or delete it whenever you want.

Help advance our knowledge of symptoms and progression of CDKL5 Deficiency Disorder by arranging a meeting with a clinician and answering a few questions. Some appointments can be done via telemedicine, too. Find out more here.

CDKL5 Centers of Excellence

The IFCR CDKL5 Centers of Excellence provide treatment and care to those affected by CDKL5 Deficiency Disorder. Each patient visit also helps us gather data to further clinical research. They also host the International CDKL5 Clinical Research Network.

Organ & Tissue Donation

Organ donation is a critical part of CDKL5 research and we honor the generous and selfless act of those who choose this path after a loved one has died. To learn more, please visit this page.