By Deron Hamel
Research programs aimed at enhancing quality of life for people with epilepsy are the most important avenue of research to those living with seizure disorders, their families and people working at epilepsy support agencies, according to a recent EpLink survey.
EpLink’s “research priorities” online survey had 139 respondents. The survey, which was conducted May 18 to Sept. 2, showed that 96 respondents said research into improving quality of life for people with epilepsy is “extremely important.” Also high on the list were research programs into seizure prediction and brain stimulation (89 people), and research into drug therapies (88 people).
“Quality of life was the No. 1 theme that people ranked as extremely important – and that’s exactly what we have been hearing in discussions with our nonprofit advisory committee and with people in the community epilepsy agencies,” says Tiffany Scarcelli, EpLink’s knowledge translation lead.
EpLink is the epilepsy research program of the Ontario Brain Institute (OBI). The survey aimed to discover which areas of epilepsy research are most important to those living with the condition to help direct the next phase of EpLink’s research.
The survey, which received responses from 139 people, also asked people what type of research project they would start, if given the opportunity. In terms of treatment, the survey showed people were most interested in marijuana products, alternatives to drugs, curing epilepsy, technologies, surgery, improving current and new drugs, gene therapy and testing, and diet therapy.
The survey showed respondents were also interested in research into understanding the causes of seizures, causes of other syndromes, seizure triggers, lifestyle factors, genetics and head injury.
The survey determined people also want to see more epilepsy information, programs, resources for female-related issues, and funding to support people with epilepsy.
EpLink’s mandate is to conduct research to improve treatments and quality of life for people with epilepsy. Scarcelli says EpLink is hoping the survey will help accomplish this goal.
“With this survey, we get a better idea of what people are most interested in, and we’re hoping that our research reflects exactly what is important to people with epilepsy, what’s important to their families, and ensuring whatever research or innovations that come out of the EpLink programs reflect the patient voice and what their needs are,” she says.
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