Trusted expert in Epilepsy Research and Care
• An organization providing services to academia and industry for improving and accelerating the design and conduct of clinical research.
• Endorsed by Epilepsy Alliance Europe, the ern epicare, the European section of the international league against epilepsy (ILAE) AND THE CORRESPONDING PATIENT ADVOCATE GROUPS (IBE, ERN EPICARE EPAGS)
Connected through our network
ECET
ECET
ECET
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Our workflow
Clinical Trial Design
We develop clinical trial protocols tailored to the specific types of epilepsy, in collaboration with researchers and healthcare professionals.
Scientific and Regulatory Standards:
We ensure each trial meets the highest scientific standards and complies with international regulations.
Multidisciplinary Approach:
Our team of experts in neurology, pharmacology, and patient care works together to ensure the effectiveness and safety of protocols.
Selection & Collaboration
We identify and select centers with recognized expertise in epilepsy to ensure the quality of trials.
Building Strong Partnerships:
We establish solid partnerships with trusted institutions, fostering an environment conducive to successful trials.
Optimizing Trial Sites:
We assess each site to ensure it meets the specific needs of the trials in terms of resources and expertise.
Support & Innovation
We provide continuous monitoring of trials to ensure they progress according to protocol and on time
Responsive to Challenges: We offer quick and innovative solutions to address any issues that arise during the trials.
Integrating Innovation: We promote the use of new technologies and therapeutic approaches to enhance trial outcomes and treatment effectiveness
Our objectives
ECET aims to improve the care of epilepsy patients by ensuring more rigorous and tailored clinical trials to meet their needs.
For researchers:
The objective of ECET is to strengthen collaboration among epilepsy experts to optimize the quality and reliability of clinical trials in Europe.
For decision-makers:
ECET emphasizes the importance of a multidisciplinary approach and the involvement of patient representatives from the very first steps of trial design.
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FAQS
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.
- 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.