What is a core outcome set?
A Core Outcome Set (COS) is a shared list of the most important things to measure when evaluating a treatment. It reflects what patients and doctors agree matters most, such as how a treatment affects seizures, daily life, health, and well-being.
A COS is created using structured consensus methods, so it represents the voices of both patients and clinicians and ensures that these key outcomes are always considered.
Why is a Core Outcome Set needed to improve epilepsy neuromodulation treatment?
People who receive neuromodulation devices for epilepsy often have experiences that are different from those of people who undergo traditional brain surgery.
These treatments can affect many aspects of daily life beyond seizure control.
To better understand whether neuromodulation treatment is successful, we need clearer and more consistent ways to measure the outcomes that matter most to people living with these devices.
What is the Delphi process?
The Delphi process is a structured way to gather perspectives from many people and identify areas of shared agreement. It is commonly used in research to make sure decisions reflect the views of everyone involved—especially patients.
Participation involves a short online survey, with the option to take part in up to two follow-up surveys. After each round, participants are shown a summary of the group’s responses. This gives you a chance to reflect on how your experiences compare with others and, if you choose, update your answers in later rounds. There is no obligation to complete all surveys.
How will this survey work?
This survey asks about outcomes that matter to you. If you choose to take part in follow-up rounds, you may receive up to two additional short surveys by email. These optional follow-ups help us understand where there is shared agreement across the group.
We ask for your email address only so we can send these optional 2 follow-up surveys. Your responses are anonymous, and your email will not be used for any other purpose.