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.
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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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