Collaborative research on Presurgical evaluation and Epilepsy Surgery

Through this section, we offer the opportunity of collaborative calls for European series of patients undergoing presurgical evaluation and/or epilepsy surgery.

The main aim of this initiative is to collect retrospective data on key presurgical and surgical topics i.e, surveys on practices and trends across European centres, seizure and non-seizure outcomes, neuroimaging, invasive EEG studies, neuropsychology, biomarkers. etc.

The ERN EpiCARE (WG8 on Presurgical evaluation and epilepsy surgery) will facilitate this type of studies by connecting several centres across Europe involved in presurgical evaluation and epilepsy surgery

The principle behind this initiative is simple:

Any medical team with experience in pre-surgical evaluation and epilepsy-surgery (member or not of the ERN EpiCARE) can submit a call for collaboration on relevant topics.
The call will be shared across all ERN EpiCARE members (and other European centres if specified by the investigator and contacts provided) and will remain open for 6 months, with a possible extension following a request from the Principal Investigator, accompanied by a supportive explanation.
The project leader is committed to bring this work to completion (at least one publication), and to keep the ERN EpiCARE management team and WG8 informed of the progress of the work.
EpiCARE’s role as facilitator will have to be acknowledged in all related publications.

You will find the submission template both here and on the WG8 webpage.

Please follow the instructions in the template and send it back to Martin Geroldinger ([email protected]), EpiCARE project manager, also copying: [email protected]. Martin will contact you after review of the project.

Please find below the list of current calls.

Click on the + sign for more information and contact details.

Please find below the list of current calls. Click on the + sign for more information and contact details.

Anti-GAD65 Antibodies in Temporal Lobe Epilepsy Surgery

Anti-GAD65 Antibodies in Temporal Lobe Epilepsy Surgery

Temporal Lobe Epilepsy (TLE) surgery fails in a minority but significant proportion of patients. We hypothesize that anti-GAD65 antibodies positivity is a distinct risk factor for seizures’ recurrence.

We aim to recruit a multi-center retrospective cohort of surgically treated TLE patients with GAD65 positivity (pre- or post-op) to evaluate surgical outcome.

Key data points:

Demographic data (age at onset, seizure frequency, antecedents)
Comorbidities, with interest in psychiatric disorders and systemic auto-immune disease
Anti-GAD65 titer and the timing of the test
MRI findings
Neuropsychological findings (if available)
Pathology (e.g., HS sybtypes, FCD, other pathology, normal)
Treatment: ASM and/or immunotherapy
Timing of seizure recurrence, seizure onset zone if available (same side, contralateral temporal lobe, or extratemporal) and seizure outcome

Long-Term Impact: Establish guidelines for routine anti-GAD65 screening and assess the prognostic significance in epilepsy surgery.

Coordinating clinician: Roberta Di Giacomo and Francesco Deleo

Institution (dept, hospital, city, country): IRCCS Neurological Institute Carlo Besta Epilepsy Unit Milan Italy, Commission for Epilepsy Surgery of the Italian League Against Epilepsy (LICE)

Contact email (institutional) of the coordinating clinician: [email protected]

Specific requirements beyond clinical data:

Neuroimaging available for centralized review: N
Histopathology available for centralized review:N
EEG available for centralized review?N
Other material available for centralized review

NB1: Depending on the type of the project a Data Sharing agreement may be required in most of the cases.

Do you already have one validated by your Institution ? YES/NO
Do you wish ERN EpiCARE to provide you with a template that you can then adapt to your project? YES/NO

Using this link you can upload relevant templates used by EpiCARE centres and partners.

NB2: Once your project accepted for dissemination, we strongly encourage you to include for

collection the “common data elements” already part of the centralized EpiCARE Registry, epiREG, held at the KUL, Leuven, Belgium (*).

The benefit from such a practice is that in case, from start or in the near future, you wish to “attach” the database (sub-registry) related to your project to epiREG this will be technically possible. An agreement will then need to be signed between your Institution and KUL, knowing that the data included in your sub-registry remains under your ownership, unless otherwise requested.

(*) To receive the template with the “epiREG common data elements” please contact: [email protected]

Published on 27 November 2025.