|
CURE Epilepsy would like to pass on some information that some individuals might find helpful.
|
|
The EPSET study needs your expertise to agree to 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 www.epsetproject.org for more information.
To complete the survey now, please click on this link: https://delphimanager.liv.ac.uk/EPSET/
If you have any questions, please contact [email protected].
Many thanks for your time,
Dr James W. Mitchell and Prof. Tony Marson
The EPSET Study Team
University of Liverpool, UK.
|
|
|
CURE Epilepsy is not affiliated with, nor has any financial investment in the EPSET study. CURE Epilepsy is sharing information about this external opportunity, and is not sponsoring nor is directly involved in this project. Should you choose to reach out to the EPSET study and/or become involved with this project, you would do so independently from CURE Epilepsy.
|
|
|
Our mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy is a non-profit 501(c)(3) tax-exempt organization. Our tax identification number is 36-4253176.
|
|
|
|
|
