We work toward advancing public awareness, education, and disclosure between medical professionals and families afflicted Sudden Unexpected Death in Epilepsy (SUDEP).
Part of our purpose at Danny Did is to engage with healthcare professionals on improving the standard of care for people with epilepsy. Specifically, we are focused on improving communication between doctors and patients about the risks of epilepsy-mortality. Honest, open dialogue can build patient-doctor trust and improve overall patient care.
In 2017, the American Epilepsy Society and the American Academy of Neurology released the first-ever Guideline on SUDEP, which recommends that providers counsel every adult epilepsy patient about the risk of SUDEP, as well as all caregivers of pediatric epilepsy patients. In October 2019, the American Epilepsy Society added this Position Statement on SUDEP Counseling. Per the AAN/AES guideline, the Danny Did Foundation urges all medical providers to disclose the risk of SUDEP!
Strategies & Initiatives for Talking About the Risk of SUDEP:
The norms and standards for disclosing the risk of Sudden Unexpected Death in Epilepsy (SUDEP) have changed significantly in the past 10 years. In this 3-minute video, pediatric epileptologist Dr. Jeff Buchhalter talks about why it is important to disclose this risk.
This published paper – from lead author Dr. Monica Lemmon of Duke University – reveals the preferences of parents and caregivers in the epilepsy community when it comes to learning about the risk of SUDEP.
Because a difficult topic like epilepsy mortality requires nuance and preparation, we share The SUDEP_Pocket_Guide to talking about difficult topics. As a related resource, these videos from the Child Neurology Foundation Toolkit offer a model for having the SUDEP conversation across a range of scenarios.
Preventing Epilepsy Deaths Toolkit
Danny Did collaborated with patients, caregivers, healthcare providers and more than 20 advocacy groups to create this new toolkit website to help the conversation between doctors, patients and parents when it comes to the topic of epilepsy-related mortality. This brochure offers a quick overview of the toolkit, for sharing with your healthcare team.
Child Health Improvement through Computer Automation (CHICA) Initiative: Partnering with the Child Neurology Foundation, Digital Health Solutions, Inc., Greenwich Biosciences (no Jazz Pharma) and the Epilepsy Foundation, Danny Did contributed to a pilot project that used technology to automatically generate SUDEP risk screening during routine primary pediatric care visits. Results showed that after starting CHICA with the SUDEP module, the number of caregivers who reported discussing SUDEP with their doctor more than doubled, from 21% to 46%. Expansion of this effort is ongoing.
Epilepsy, Knowing Your Risks. This brochure outlines some of the most important safety areas of concern that those with epilepsy are likely to have, including the risk of SUDEP. We encourage providers to distribute this resource to adult patients or to caregivers as a tangible leave behind from your visit. To access this brochure in Spanish, click here.
Patient Education Materials on SUDEP: Danny Did co-created these materials with the Child Neurology Foundation and the Epilepsy Foundation that help to access SUDEP risk level. We encourage a conversation with your patient or their caregiver to determine whether the low risk or high risk SUDEP information sheet is most applicable to their loved one. These materials are available in both English and Spanish.
*To request hard copies of any of these brochures for a hospital, doctor’s office or healthcare clinic, please email email@example.com.
Continuing Educating for Medical Professionals
The International League Against Epilepsy (ILAE) has developed this educational curriculum for epilepsy featuring three levels of professional expertise: entry level, proficiency and advanced proficiency. Teaching competency in the diagnosis and clinical management of epilepsy and the communication around SUDEP is a top priority for the ILAE.
Partners Against Mortality in Epilepsy (PAME): Danny Did is a founding member of this coalition of bereaved families, advocates, clinicians, researchers, public health officials and people living with epilepsy. Healthcare professionals are important to the PAME movement and to the common goal of improving our understanding of and working to prevent epilepsy-related forms of mortality, including suicide, accidents, and status epilepticus, and SUDEP. The 2022 PAME meeting Nashville was sold out. The 2023 meeting will be held in Orlando, FL.
Epilepsy Mortality Research Initiatives
North American SUDEP Registry (NASR)
Accurately tracking how often SUDEP occurs is critical. Bereaved family members can support research and surveillance efforts by including their family member in the North American SUDEP Registry (NASR). Its goal is to encourage accurate recognition and reporting of SUDEP-related deaths, and to provide researchers with a body of data that will result in a greater understanding of SUDEP, its causes, and possible means of reducing patient risk. The lead for this project is Dr. Orrin Devinsky. To learn more about the NASR initiative, click here, call (855) 432-8555, or email at firstname.lastname@example.org.
To read a 2018 National Association of Medical Examiners (NAME) position paper published in Epilepsia and titled, Recommendations for the investigation and certification of deaths in people with epilepsy, click here.
The Centers for SUDEP Research
The Center for SUDEP Research (CSR) is a National Institute for Neurological Disorders and Stroke (NINDS) funded Center Without Walls for Collaborative Research. This milestone-driven collaboration is composed of researchers from 14 institutions across the United States and Europe and brings together diverse expertise to understand Sudden Unexpected Death in Epilepsy Patients (SUDEP).
The CSR’s scientists and physicians investigate and elucidate these links with their expertise in molecular biology, genetics, histopathology, electrophysiology, brain imaging, data analysis, and more. The team will identify the molecular and structural brain abnormalities underlying SUDEP, utilize these discoveries to identify features that could predict and identify those at risk of SUDEP, and focus those targets for the development of potential therapeutic interventions.
This investment by NINDS over nearly five years promises to catalyze research on SUDEP and dramatically enhance our understanding of this poorly understood and devastating phenomenon. Learn more here. The DDF is an advocacy partner to CSR.
Sudden Death in the Young (SDY) Case Registry
The work of the Sudden Death in the Young (SDY) case registry is a collaboration of the National Institutes of Health (NIH), the Centers for Disease Control (CDC) and partner centers in 14 states that are collecting data on cases of sudden death in the young that will inform research. These cases may involve any type of sudden death, including cases of including SUDEP. To learn more or to get involved, visit www.sdyregistry.org.
Help Make a Difference
Your giving support makes a huge impact for the 1 in 26 Americans who will develop epilepsy over their lifetime. Your tax deductible contribution supports our mission to protect people who face epilepsy.
The Danny Did Foundation is a not-for-profit corporation organized in the state of Illinois and recognized by the Internal Revenue Service as a 501©(3) tax-exempt organization. Our Tax ID number is 27-1642251. We hold a Gold Level charity rating from Guidestar.https://www.guidestar.org/