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EPSET Study: International Survey for People with Epilepsy, Researchers and Clinicians


The EPSET study needs your expertise to agree a set of core outcomes that should be measured in all future studies investigating the effectiveness of treatments for adults with epilepsy.

What are core outcomes?

In epilepsy research, the choice of outcomes measured varies widely, particularly in clinical trials. This variation leads to research waste and difficulty combining and comparing results from different studies. It is also unclear whether the outcomes currently being measured in research are relevant to people with epilepsy. The EPSET study wants to find out which outcomes are the most important and should always be measured.

How you can help

We are inviting the following groups to share their views:

  • People aged 18 or above with epilepsy and their representatives (including family, caregivers and members of patient advocacy groups)
  • Healthcare professionals (doctors, nurses and allied health professionals who regularly treat and/or support people with epilepsy)
  • Researchers working in epilepsy clinical trials

We need you to share your opinion on which outcomes are the most important to measure and should be included in the core outcome set.  This will involve two online surveys, in line with COMET Initiative methods.   These should take 10-15 minutes to complete.

The first survey is available to complete now, and the second will be sent out to those who register after a couple of months.

Please see for more information

To complete the survey now, please click on this link:

If you have any questions, please contact

Please note -Epilepsy Aliliance America is not affiliated with, nor has any financial investment in this study. We are sharing information about this external opportunity. We are not sponsoring or directly involved in this project.