JOINT TASK FORCE
The American Epilepsy Society (AES) and Epilepsy
Foundation (EF) formed a Joint Task Force (JTF) to assess the state of knowledge regarding SUDEP. The JTF
(which included SUDEP Aware’s Dr Elizabeth Donner) met in June and its charge was to:
develop a position statement
regarding the discussion of SUDEP with patients and their families and caregivers;
design methods by which the medical and lay communites become aware of the risk
directions in SUDEP;
steps that organisations can take to perform large-scale, prospective studies of SUDEP to identify risk factors; and
identify possible preventative strategies for
Meeting findings and recommendations have
been outlined in a JTF report.
SUDEP AWARE was founded
in Canada by Dr Elizabeth Donner & Tamzin Jeffs.
a 2.5 day multidisciplinary workshop took place in response to one of the JTF report recommendations calling for such a gathering to help “refine current lines of investigation and to identify
additional areas of research for mechanisms underlying SUDEP”.
was convened by NIH/NINDS and was attended by: experts
from disciplines related to the issue of sudden death; patient and professional educators; advocates from the bereaved community;
and guideline development specialists.
The workshop included
two parallel sessions:
Session (exploring clinical risk factors, cardiac and autonomic mechanisms, methodology for case identification and preventative
measures) and was attended by SUDEP Aware’s
Dr Elizabeth Donner; and
an Education Session (addressing ethical issues, methods of educating
patients, families and physicians as well as the possibility of developing specific practice guidelines).
A summary of the workshop discussions and recommendations was subsequently published
in a meeting report.
order to maintain the momentum of the workshop, sponsoring members continued to meet, by teleconference and at the AES annual meeting,
as a SUDEP Coalition. This is a consortium of epilepsy
researchers, health practitioners and advocates dedicated to advancing the understanding of SUDEP (and includes SUDEP Aware’s Dr Elizabeth Donner and Tamzin Jeffs) with a mission to:
"provide coordination among organisations
that support research, education and advocacy regarding sudden death in epilepsy"; and
identify priorities: education (professional and lay,
common materials); research (clinical and basic); and support network (for those affected by SUDEP).
One such member, the EF, was charged with coordinating a SUDEP Education Workgroup (which
includes SUDEP Aware’s Tamzin Jeffs).
The SUDEP Coalition continued to meet via teleconference and at the AES annual meeting.
SUDEP Education Workgroup progress included:
Creation and distribution of a SUDEP FAQ (via websites, Twitter).
- Creation of an EF affiliate
toolkit ‘script’ for use when affiliates speak to callers with questions about SUDEP.
EPILEPSY MORTALITY SURVEILLANCE PLANNING MEETING
October, the US Centers for Disease Control and Prevention (CDC)
Epilepsy Program, in collaboration with the National Institute for Neurological Disorders and Stroke (NINDS), convened a meeting
of experts to consider the potential contribution of public health surveillance toward a better understanding of SUDEP and
other causes of epilepsy-related mortality (and included SUDEP Aware’s Dr Elizabeth Donner & Tamzin Jeffs.)
SUDEP campaign MAKING SENSE OF SUDEP was initiated by SUDEP Aware, representing a collection of individuals and organisations working
together with the common goal to raise awareness and understanding of SUDEP through providing education resources, encouraging
open discussion and a collaborative agenda.
First PARTNERS AGAINST MORTALITY IN EPILEPSY CONFERENCE took place 21-24 June @ Hilton Orrington in Evanston, IL, USA. It brought together clinical,
basic science and patient/family attendees to discuss SUDEP in an open, learning, collaborative and hope-filled environment.
A joint effort of SUDEP Coalition partners AES, CDC, CURE, EFA, ETP/FACES, NINDS & SUDEP Aware.