The ECET is an organization bringing together European experts in epilepsy care andresearch. It aims to improve the quality of clinical trials for epilepsy by providing guidance,expertise, and support for both industry and academic stakeholders.

ECET was founded to address significant shortcomings and challenges in epilepsy trials,including:

- Annual number of new epilepsy patients in Europe: 30,000 children and adolescents;96,000 in adults 20–64yrs; 85,000 in the elderly.

- More than 30% develop a rare or complex form, often drug-resistant.

- Nearly 150 rare diseases have epilepsy as their main symptom. The selection of epilepsy syndromes to perform a clinical trial is still often made rather randomly, the rationale behind such choices rarely provided.

- The methodology and global design of drug trials is often not adapted to the type of epilepsy/syndrome studied. Comorbidities are rarely considered.

- The confusion between treating a type of epilepsy and evaluating the control of one ormore types of seizures is very frequent, affecting the validity of the results.

- Short follow-up periods can fail to capture long-term efficacy and safety of treatments,especially since some patients may have fluctuating seizure patterns.

- Feasibility questionnaires are very frequently not relevant to the real challenges centers are facing when including patients into an epilepsy trial. This is one of the many factors leading to inappropriate selection of sites to conduct them.

- Seizure-counting may need to be adapted to the type of epilepsy studied.

- Specificities of the epilepsies: genotype-phenotype correlations (ex. SCN8A)

- Biomarkers, when known, do not have the same significance (ex. VEEG monitoring)

- High number of trial sites, leading to significant patient heterogeneity.

- Training of caregivers and/or patients must be adapted to the design of each trial.

- Input from patient advocates when designing new trials is mandatory.

ECET is governed by Prs. Alexis Arzimanoglou (Spain) and Eugen Trinka (Austria).Mrs Sébile Tchaicha acts as the Executive Director of ECET Ltd.

ECET collaborates with experts from over 32 European countries

The consortium is dedicated to enhancing the quality of collaborative epilepsy trialsacross Europe, focusing on both pediatric and adult populations.

ECET is distinguished by its multidisciplinary approach and its comprehensive suite ofservices. We work with academics, Pharma, CROs and other stakeholders to:

- Identify priorities in epilepsy care in partnership with scientific societies and reference networks.

- Enhance and accelerate clinical trials with a scientifically sound methodology designed by experts in the field.

- Facilitate networking between epilepsy centers with established expertise and support site selection.

- Facilitate insight from patient advocates and caregivers.

ECET provides a range of services, including:

- Expert advice on trial design and methodology.
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- Selection of trial sites across Europe and beyond.

- Development of tailored feasibility questionnaires.

- Support for precision medicine and disease-modifying approaches.

- Centralized and standardized adjudication process to reduce variability in multicenter trials

- Lead and support natural history studies

- Collaboration with patient associations to ensure patient-centered trials.

- Promote and facilitate the funding of academic trials

- Educational activities

ECET actively involves patient representatives in the design and review of clinical trials,ensuring their needs and perspectives are integrated. This includes input on trial burden,risk/benefit balance, and meaningful outcomes.

Medical teams with expertise in clinical trials can apply to join ECET, while industry professionals and investigators can contact us to utilize our services.

We invite you to complete the following questionnaire:

https://www.surveymonkey.com/r/KGF2J83

This form is designed to help us gather detailed information about your center’s logistical capabilities, clinical trial experience, and specific expertise in epilepsy research.