New Law Will Help Further Research Into Sudden Unexpected Deaths from Epilepsy
Legislation sponsored by Assembly Democrats Mila Jasey and Herb Conaway, Jr., M.D. to help support research that might prevent sudden, unexpected deaths caused by epilepsy has been signed into law.
Sudden, unexpected death in epilepsy (SUDEP) is a mysterious, rare condition in which typically young or middle-aged individuals with epilepsy die without a clear cause. The condition is typically underreported for various reasons, including lack of awareness among medical examiners.
“Research to help prevent this mysterious condition has been hindered more often than not by the lack of a systematic collection process for medical information and brain tissue from individuals who may have died from SUDEP,” said Jasey (D-Essex/Morris). “This new law will hopefully provide researchers with key insight into this condition to help treat or cure it.”
This new law will require that the State Medical Examiner, in consultation with the state Commissioner of Health and the State Board of Medical Examiners, establish a SUDEP awareness program to educate medical examiners.
“As with any illness, research is the key to treating it, preventing casualties and eventually finding cures,” said Conaway (D-Burlington). “As it stands now, medical examiners often do not recognize that a death may be the result of SUDEP. This new law will help them identify deaths that might result from this condition in order to increase its diagnosis and further support research.”
The law further requires that the office of the State Medical Examiner, in consultation with the county medical examiners and organizations with expertise in SUDEP, establish standard protocol governing investigations of deaths involving seizure disorders in order to enable medical examiners to better identify SUDEP, and to work with these organizations to reach out to next-of-kin to encourage the donation of medical information and brain tissue of individuals who have died from SUDEP for research purposes, consistent with health privacy laws.