NORSE & FIRES Family Registry
Scheduled to close on December 31, 2025.
This international registry collects information from families, patients, and physicians through the REDCap online platform and is scheduled to close on December 31, 2025.
Patients and families who wish to share their experiences are encouraged to enroll now.
What Is the Family Registry?
To better understand NORSE and its sub-category FIRES, Dr Teneille Gofton of Western University, Canada, alongside investigators at the NORSE Institute, created the NORSE/FIRES Family Registry.
This international online registry collects detailed patient data to build a comprehensive picture of who is affected by NORSE and FIRES, and what happens during and after the illness. The findings support research efforts aimed at improving diagnosis, treatment, and outcomes.
For more detailed scientific information, you can read about the registry in the professional journal Epilepsy Currents.
Why Participate?
Taking part may bring up difficult memories. We know this can be hard, and we are deeply grateful for your time and emotional commitment.
Your contribution will help researchers better understand NORSE and FIRES and push forward the search for answers and better care.
The Family Registry welcomes data from:
Patients currently in the acute phase of NORSE or FIRES
Survivors who have recovered
Families of those who have sadly passed away
Patients suspected to have had NORSE or FIRES, even if not formally diagnosed
Including every possible case is vital to build a complete understanding.
Who Can Join?
How to Enrol
To get started, please:
Review and sign the consent form
Submit your consent to gain access to the secure NORSE Family Registry portal
Accessibility & Languages
We want to make participation as easy as possible. The consent form and registry portal are available in multiple languages, including:
English - NORSE/FIRES Family Registry
French - Registre des familles NORSE
Spanish - Registro Familiar NORSE
Mandarin Chinese - 葡萄牙语家庭登记
Portuguese - Registro de familia em portugues
Hindi - पुर्तगाली में परिवार रजिस्ट्री
Korean - NORSE/FIRES 가족 등록부