The IFCR’s Connect CDKL5 platform gives you a seat at the table with pharmaceutical companies, clinicians and researchers. Connect CDKL5 can help you better advocate for your loved one with CDKL5. Learn more here.
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 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 Clinical Research & Trials
Learn about new drugs under development and other current CDKL5 clinical research.
CDKL5 International Registry & Database
As a parent, you can enroll in this registry and fill out a questionnaire. By responding to the questions, you help inform our understanding of the progression of CDKL5 Deficiency Disorder. Parents have been contributing to this database since it was established in 2012. It is a collaborative effort between researchers in Australia and the IFCR and the data has been used in multiple CDKL5 Deficiency research publications. For more information, click 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.
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.