CDKL5 Deficiency PFDD Panelist Application
On November 1, 2019, IFCR and the Loulou foundation will co-sponsor an externally-led Patient-Focused Drug Development (PFDD) meeting for CDKL5 Deficiency Disorder. This meeting is a very rare opportunity to convene patients, regulators, researchers, developers, and health-care professionals to discuss treatments and drug development in CDKL5.

A portion of the PFDD meeting will consist of two panels of parents providing testimonies to the assembled members of the FDA. We are looking for 5 panelists to talk about the symptoms and impacts of living with CDD, and 5 panelists to talk about their experience with treatments and their preferences for future treatments. In the form below you will be asked about your experience on both topics through a series of questions. You don't have to select one topic, and we would like to learn broadly about your experience and your testimony through the different questions.

The deadline for applications is August 20. IFCR and the Loulou Foundation, who are organizing the PFDD, will then review your applications and will select the panelists to ensure representation of patients from different ages, genders and medical situations. We will let you know if you have been selected for one of the panels on August 30th. We thank all applicants for helping our community make this PFDD a success.

You can learn more about the purpose of this meeting by viewing this informational webinar

Please find and review the required time commitments for panelist training at this link:

Email address *
I understand the time commitment required for panelist participation training *
What is your name? *
Your answer
How old is your child (in years)? *
Your answer
What is your child's gender? *
Where do you live? *
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What type of area do you live in? *
Is your child American Indian or Alaskan Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, White, or some other race? *
Of all the symptoms of CDKL5, which 1-3 symptoms have the most significant impact on the life of your child? How have these symptoms impacted your child’s ability to do specific activities that are important to your child? *
Your answer
How have your child’s symptoms changed over time? How do they vary from day-to-day, week-to-week, etc.? *
Your answer
What are you currently doing to manage your child’s CDKL5 symptoms? How well do these treat those symptoms, and what are their most significant downsides? *
Your answer
Short of a complete cure, what specific things would you look for in an ideal treatment for CDKL5? *
Your answer
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