Clinical Trial Experience Questionnaire
As the CDKL5 Deficiency community wraps up a couple of trials we would like to better understand your experience during trial participation. This will help us inform future trial design with your feedback in mind.
Did you find it difficult to remain compliant with your clinical trial protocol? *
If so, what was challenging (e.g., better instruction on administering missed doses, different seizure diary)?
What can be done to alleviate the burden on caregivers (e.g., travel accommodations)? *
What are the biggest challenges you have faced with clinical trial participation? *
What is your preference when tracking seizures for your child with CDD? *
Please explain the reasoning behind your preferred choice in the above question. *
Are the current clinical trial tools (e.g., seizure diaries, apps) useful for caregivers when attempting to record multiple seizure types? *
What tools, technology, or resources would make capturing less “obvious” seizure types more manageable (i.e., identifying subtle seizures such as atypical absence or nocturnal seizures vs. motor)? *
Would you be interested in using other electronic devices to track metrics (e.g., wearables)? *
What has been your experience using wearables or seizure detection devices with your child that is impacted by CDD? *
Would you be interested in conducting virtual visits with a clinician to collect data for clinical trials? *
What has been your experience with virtual clinical visits? Please share your thoughts on what can and cannot be accomplished via telehealth. *
What would be your preference for future lab draws (especially unknown timeframe of social distancing restrictions)? *
Please explain the reasoning behind your preferred choice in the question above. *
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