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CDKL5 Patient-Focused Drug Development

Meeting Agenda Post-Meeting Survey

The International Foundation for CDKL5 Research and LouLou Foundation co-hosted a Patient-Focused Drug Development Meeting (PFDD) in November 2019 for the U.S. Food and Drug Administration (FDA). PFDD meetings are part of an FDA initiative to systematically gather patients’ perspectives about their condition and available therapies. Although there are more than 10,000 diseases, only a few dozen have been the subject of a PFDD meeting – and CDKL5 Deficiency is among them.

In the CDKL5 PFDD meeting, researchers and drug development stakeholders met with families and caregivers of those affected by CDKL5 Deficiency Disorder. Their goal was to learn which avenues of research would be most impactful to the daily lives of the CDKL5 community.

Voice of Patient Report

The thoughts and perspectives of these families and caregivers have been compiled into a Voice of Patient Report. This report describes which symptoms matter most to the CDKL5 community; it also gives their thoughts on treatment and management of the disorder.

After the meeting, a survey was conducted, which has been compiled into the CDKL5 Deficiency Disorder PFDD Post-Meeting Survey.

You can also view the PFDD meeting in its entirety here: