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1. How old was your loved one when they were diagnosed with epilepsy?

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2. How much longer, after an epilepsy diagnosis, did it take to get a CDKL5 Deficiency Disorder (CDD) diagnosis?

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3. Was this confirmed through a genetic test?

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4. How effective have current treatments been in managing your loved one’s seizures?

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5. How easy or difficult has it been to access CDKL5 Deficiency Disorder (CDD)-specialists?

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6. What sources do you rely on most for information about CDKL5 Deficiency Disorder (CDD) treatments? (Rank 1 being most important, 5 being least important)

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7. What do you feel is the biggest unmet need in your loved one’s current CDKL5 Deficiency Disorder (CDD) treatment plan?

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8. What factors are most important to you when considering a new treatment option for your loved one?

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9. How challenging is it for you to coordinate care across healthcare providers, services, and support systems for your loved one?

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10. Which caregiver or family support needs related to CDKL5 Deficiency Disorder (CDD) need the most improvement? (Select TOP 3)

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11. How valuable would caregiver-focused support programs provided by a pharmaceutical company be in improving your family’s ability to manage CDKL5 Deficiency Disorder (CDD)?

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12. Which member of your loved one’s healthcare team do you trust most to support your family’s needs related to CDKL5 Deficiency Disorder (CDD)?

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13. Are there areas in which you feel your loved one’s’s healthcare team does not adequately support you or your family?

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