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SUDEP Survey

SUDEP: Sudden Unexpected Death in Epilepsy

This post is intended to reach families affected by SUDEP. An important survey is linked at the bottom. If you know someone who has lost a loved one to SUDEP, please share this post with them so they may contribute.

SUDEP researchers at Creighton University are studying the experiences and perspectives of people who have lost a loved one to SUDEP, and we are sharing this survey to advance their efforts. The survey focuses on you and your loved ones’ experiences prior to SUDEP. Understanding details about what you and/or your loved ones may have noticed can help researchers better identify potential signs or warnings. Your answers will help to steer future medical studies that can predict and hopefully prevent SUDEP for other families. Below is a link for the survey, which will take about 5-15 minutes to complete. We realize this is a big request, and we appreciate your consideration.

  • Your answers are anonymous. However, if you’d like to dedicate your responses to your loved one, there is a space for that at the end.
  • The data will be made available to researchers in spring 2021.
  • Your participation is voluntary, and you can withdraw at any time. The survey does not ask for personally identifiable information.
  • Since you are asked about your memories of SUDEP, emotional risks may occur. If you experience distress, contact your healthcare provider, mental health expert, SUDEP support group or hotline 800-322-1000 (en Español 866-748-8008), or call the depression hotline support group at 800-828-3632.
  • There are no benefits for completing this survey. If you would like to review your Participant’s Bill of Rights, click here.

Thank you very much for your consideration,

The Charlie Foundation Team

Kristina Simeone, PhD

kristinasimeone@creighton.edu

Associate Professor
Department of Pharmacology and Neuroscience Creighton University School of Medicine

Author

Dawn Martenz

A self-taught keto chef and mom to Charlotte who has been on variations of ketogenic diet therapy for over 10 years for Davet's Syndrome. She's authored 2 ketogenic cookbooks and features new recipes monthly on CharlieFoundation.org.

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