Healthcare Providers

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 includes videos that model various scenarios for this conversation. 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.

From Duke University (in collaboration with Danny Did): A conversation guide for discussing SUDEP with patients

Informational Brochures:

About Danny Did Overview: This brochure spells out who we are and what we do. To access this brochure in Spanish, click here.

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.

Danny Did Device Grant Program: An overview of our process for providing funding for alerting devices. To access this brochure in Spanish, click here.

*To request hard copies of any of these brochures for a hospital, doctor’s office or healthcare clinic, please email info@dannydid.org.

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 info@sudep-registry.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.