Healthcare Providers
We work toward advancing public awareness, education, and disclosure between medical professionals and families impacted by 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.
Strategies & Initiatives for Talking About the Risk of SUDEP:
AES/AAN SUDEP Guideline: In 2017, the American Epilepsy Society and the American Academy of Neurology released the first-ever Guideline on SUDEP, which recommends that providers communicate with every adult epilepsy patient about the risk of SUDEP, as well as all caregivers of pediatric epilepsy patients. The guideline states that healthcare providers should inform adults and caregivers that SUDEP affects about 1 in 1,000 adults each year. It also recommends discussing that better seizure control—especially preventing generalized tonic-clonic seizures—is strongly associated with a lower risk of SUDEP. The Danny Did Foundation supports these recommendations and encourages healthcare providers to make SUDEP counseling a routine part of epilepsy care.
AES Position Statement on SUDEP Counseling: In October 2019, the American Epilepsy Society adopted a Position Statement on SUDEP Counseling. Consistent with these recommendations, the Danny Did Foundation urges all healthcare providers to discuss the risk of SUDEP with every adult living with epilepsy and with the parents or caregivers of every child with epilepsy.
Why Every Family Should Hear About 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.
What Families Want: Research on SUDEP Communication: This published paper – from lead author Dr. Monica Lemmon of Duke University in collaboration with Danny Did and other advocates – reveals the preferences of parents and caregivers in the epilepsy community when it comes to learning about the risk of SUDEP. As a related resource stemming from this project, please review and share A conversation guide for discussing SUDEP with patients.
Talking About Difficult Topics: Because a difficult topic like epilepsy mortality requires nuance and preparation, we also share The SUDEP_Pocket_Guide to talking about difficult topics.
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 toolkit features our Board Member, Dr. Rebecca Garcia-Sosa, and Family Ambassador Megan Turner in a series of videos that model compassionate, real-world conversations about SUDEP, helping families and doctors to feel more prepared to discuss this important topic.
Child Health Improvement through Computer Automation (CHICA) Initiative: Partnering with the Child Neurology Foundation, Digital Health Solutions, Inc., Greenwich Biosciences (now 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..
Information and Resources on Device Use:
Informational Brochures:
Danny Did Foundation Overview: This brochure explains who we are, what we do, and how we support individuals and families living with epilepsy. This brochure is also available in Spanish
Understanding Epilepsy Risks: This brochure highlights important safety considerations for people living with epilepsy, including the risk of SUDEP, and serves as a helpful resource to share with patients and caregivers.
SUDEP Patient Education Materials:These English and Spanish resources help healthcare providers discuss SUDEP risk with patients and caregivers and determine whether low- or high-risk information is most appropriate.
Danny Did Device Grant Program: Learn about our grant program, which provides financial assistance for FDA-cleared seizure detection and alerting devices.
*To request hard copies of any of these brochures for a hospital, doctor’s office or healthcare clinic, please email [email protected] .
Continuing Education 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 Annual PAME meeting is held each December, to learn more click here
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. Daniel Friedman, MD. To learn more about the NASR initiative, click here, call (855) 432-8555, or email at [email protected].
NAME Position Paper: to review the 2018 Epilepsia position paper, Recommendations for the Investigation and Certification of Deaths in People with Epilepsy, which provides guidance for medical examiners and coroners investigating epilepsy-related deaths.
The Centers for SUDEP Research: is a collaborative research initiative funded by the National Institute of Neurological Disorders and Stroke (NINDS). Bringing together experts from 14 institutions across the U.S. and Europe, the Center is advancing our understanding of SUDEP by identifying its underlying causes, improving the ability to recognize those at greatest risk, and supporting the development of future strategies to prevent epilepsy-related deaths. 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/