Epilepsy Research Institute SUDEP workshop paper published in American journal, Epilepsy & Behavior

Several Epilepsy Research Institute-funded researchers are currently investigating the mechanisms behind SUDEP. However, we still know little about why some people are at greater risk than others. The SUDEP workshop by the Institute’s Mortality, Morbidity & Risk theme was attended by experts from diverse backgrounds, including basic science researchers, clinicians and clinical researchers, charity partners, bereaved individuals and people with epilepsy. 

What are the key takeaways from the paper? 

The paper highlights the identification of important gaps in both pre-clinical and clinical research. It outlines recommendations for future research to address these gaps, and emphasises the importance of developing infrastructures that utilise data-driven approaches to reduce SUDEP risk.  

Several recommendations were identified: 

• Pre-clinical research needs to be supported by promoting international cross-institution collaborations and seeking expertise from fields such as cardiovascular and respiratory science.  

• There is a pressing need to advance our understanding of the common mechanisms (e.g. respiratory depression, autonomic dysfunction, and cardiac instability) underlying SUDEP. Research of this kind will inform prevention approaches. 

• Experts say research is needed to investigate how risk information is delivered to patients and how this can be improved to be more effective for each individual.  

• There is a clear need to better identify and track modifiable risk factors (those health risks individuals can change or reduce through lifestyle modifications and, sometimes, medical treatments) and how these change throughout the life course. This will play an integral role in identifying when someone is at high risk and in need of targeted interventions. 

• The need to develop infrastructure to support the collection, standardisation and optimisation of epilepsy patient data across several platforms, for example, healthcare systems, epilepsy brain banks and biobanks were proposed and could be fundamental in driving forward research efforts in this field. 
  
  

It was evident that engagement with the wider research community, as well as broader stakeholders, including people with epilepsy, charities, healthcare professionals and government bodies, will be essential in the further development and implementation of these recommendations. 

Want to know more? Read the full paper here.