On February 26, 2013 the SUDEP Institute of the Epilepsy Foundation hosted a full day meeting to get feedback and suggestions on how the Institute can best unite and support existing SUDEP efforts. The objective was to determine how to best address gaps in three focus areas: education and awareness, research and supportive care.  The meeting included representatives from: NIH/NINDS, CDC, AES, AAN, CURE, Danny Did, SUDEP Aware, Epilepsy Bereaved, Epilepsy Australia, ICE Alliance, Dup15q Alliance, Dravet Syndrome Foundation and Lennox-Gastaut Syndrome Foundation. Attendees also included neurologists, nurses, researchers, medical examiners and families.

The meeting was incredibly productive and can be summed up well by this quote from a participant:

“Thank you so much for including me in the meeting yesterday. I have renewed energy and please know that I will work with the SUDEP Institute to for whatever is needed.  The great work that has been done so far is very impressive. The unselfish passion of this group on behalf of persons with epilepsy is amazing.” 

Below please find highlights of next steps for the SUDEP Institute based on the feedback from the Kick-Off meeting. The goal is to initiate activities within the timeframe noted. All efforts will be done in a collaborative way and we will involve and engage our partners as appropriate. Funding for these efforts will come from multiple sources including partner organizations, corporate and individual contributions. Results will be dependent on obtaining the resources required.

Goals for 2013

  • Initiate conversations to include SUDEP as part of basic epilepsy education and Epilepsy Quality of Care Guidelines

  • Host Medical Examiner and Coroner workshop to determine best practices and build awareness of SUDEP in the death investigation community

  • Update Epilepsy Foundation online and print materials to include current information on SUDEP

  • Expand and improve Epilepsy Foundation support services around SUDEP, both online and through support staff.

  • Consolidate and publish all research and funding opportunities in SUDEP on epilepsy.com

  • Support and promote SUDEP Registries

Goals for 2014

  • Support and promote SUDEP Guidelines as presented by the American Academy of Neurology and the American Epilepsy Society

  • Develop SUDEP training for medical professionals including medical examiners and coroners

  • Begin to work with partners to set a research agenda, define gaps and roles.

  • Raise visibility of SUDEP through professional publications and meetings, as well as in regional and national media.

  • Continue to expand online, print and phone services around SUDEP.

  • Continue to work to get SUDEP autopsy protocols in more states/regions.

Goals for 2015

  • Continue to offer SUDEP training for medical professionals including medical examiners and coroners

  • Continue to expand online, print and phone services around SUDEP.

  • Continue to raise visibility of SUDEP through professional publications and meetings, as well as in regional and national media.

  • Develop SUDEP specific Grant Program

  • Build awareness and participation in registry and epilepsy mortality research.

  • Continue to work to get SUDEP autopsy protocols in more states/regions.

To learn more about the plans of the SUDEP Institute or to find out how you can help, please contact cwright@efa.org

by Cyndi Wright
Director, Epilepsy Foundation SUDEP Institute
Last Reviewed: 5/20/2013

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