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COVID-19 Experiences in the Rare Epilepsy/DEE community
This survey is being conducted by DEE-P Connections,
a collaborative project run by Wishes for Elliott.
The purpose of this survey is to better understand how families who have loved ones with rare epilepsies (also known as DEEs or developmental and epileptic encephalopathies, which is how we refer to them throughout this survey) have navigated decisions about whether to vaccinate their child with a DEE against COVID-19, document any side effects and better understand the severity of any COVID-19 infections for those with DEEs.
The survey includes questions about demographics of the loved one with a DEE, vaccination decision-making, side effects observed, experiences with COVID-19 infections for those with rare epilepsies and a little about you as a caregiver. The survey should take about 15 minutes to complete.
Your name will not be attached to your answers and cannot be traced back to you. Results from this survey may be submitted for publication. Results may also be shared publicly with the wider DEE-P Connections community, health care providers, on the DEE-P Connections website and through other public channels.
This is a research study and your participation in this survey is fully voluntary. Participants in this survey should be a primary caregiver to someone living with a rare epilepsy. If you have any questions, you may contact the lead investigators:
Dr. Daniel Freedman - daniel.freedman@austin.utexas.edu
