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Research Request - Help Validate a core set of outcomes for people living with epilepsy

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Our colleagues in the International Consortium for Health Outcomes Measurement (ICHOM)– an international non-profit organisation that aims to improve global healthcare – is seeking feedback from adults living with epilepsy in Ireland as part of their continuing project on developing a minimum set of outcomes for people living with epilepsy.

Outcomes are the end results of care received. They cover everything from your physical health, disease symptoms, emotional health, social well-being, and the ability to work. The Epilepsy Working Group of ICHOM, consisting of healthcare professionals and lived experience experts, has reached an agreement on the set of outcomes most important to patients with Epilepsy, and how to measure these outcomes in clinical practice.

However, the working group are keen to establish whether the outcomes they have captured are meaningful and reflect what people with lived experience with epilepsy find most important.

If you are an adult living with epilepsy, the team would greatly appreciate your feedback by completing their online survey. The survey will take approximately 10-15 minutes to complete and can be accessed by visiting the ICHOM website. The survey is completely anonymous. 

If you have any further questions regarding this project or survey, you can contact the ICHOM project manager, Frieda Sossi by emailing

Thank you in advance for your support for this important research and if you would like any further information on ICHOM, you can visit the ICHOM website.