European Collaboration for Epilepsy Trials
Why create ECET?
Well-designed clinical trials are essential to provide the evidence needed for rational treatment choices. Clinical trials of antiseizure treatments conducted in the past have many shortcomings, and there is a lack of randomized trials in the majority of epilepsy syndromes. There is a need for stakeholders to promote high quality trials in epilepsy, ideally through establishment of international collaborative networks of qualified investigators.
Similar issues are to be considered when designing and performing trials within the epilepsy-surgery indications and outcomes.
Based on these premises, a group of European clinical investigators with a special interest in the treatment of epilepsy established a collaborative group named European Collaboration for Epilepsy Trials (ECET) with the goal of promoting and improving the quality of collaborative epilepsy trials in Europe, in both adults and children.
What is ECET?
ECET is formally operating within the framework of Epilepsy Alliance Europe (EAE), a non-for-profit organization registered in Ireland that brings together European professional and lay stakeholders associated with the International League Against Epilepsy (ILAE) and with the International Bureau for Epilepsy (IBE) to promote prevention, treatment and research of epilepsy.
ECET participants are mostly affiliated with EpiCARE (see the list of EpiCARE members here), particularly those involved with the Working Group on Clinical Trials and Targeted Therapies. The group also includes experienced investigators outside EpiCARE, including those based in other than EU countries in the European region.
Patient representatives
Their role will include reviewing processes, considering the needs of the epilepsy community as a whole.
The patient perspective (such as the risk/benefit balance and the potential burden of trials for caregivers and patients) is paramount to design efficient clinical trials and definition of expected outcomes.
ECET encourages patient representatives’ involvement in research, as they provide a unique perspective on the unmet needs of patients and their caregivers.
A list of participating patient representives will be available soon.
ECET's services
To learn more about ECET and the challenges of epilepsy trials in Europe, watch this webinar by Julius Clinical.
During this webinar, hosted by Dr. Lieza G. Exalto, Prof. Jacqueline French, Prof. Alexis Arzimanoglou and Prof. Eugen Trinka discussed:
> Experiences of the US Epilepsy Consortium
> What is the role of European Reference Network EpiCARE in Epilepsy Trials
>The added value of the European Collaboration for Epilepsy Trials (ECET) consortium
ECET Organisation
ECET is governed by Alexis Arzimanoglou and Eugen Trinka, with Reetta Kälviäinen as the treasurer, and Philippe Ryvlin as secretary.
Eugen Trinka
Chair
Alexis Arzimanoglou
Co-chair
Reetta Kälviäinen
Treasurer
Philippe Ryvlin
Secretary
Sébile Tchaicha
Project manager
The Coordinating Committee is composed of:
- Eugen Trinka (ECET Chair)
- Alexis Arzimanoglou (EpiCARE Coordinator ; ECET co-Chair)
- Reetta Kälviäinen (ECET Treasurer)
- Philippe Ryvlin (EAE representative ; ECET Secretary)
- Helen Cross (ILAE, EAE representative)
- Renzo Guerrini
- Rima Nabbout
- Francesca Sofia (IBE, EAE representative)
- Vicente Villanueva
Project Manager: Sebile Tchaicha
If you are a medical team with recognized expertise wishing to join ECET , or an industry professional / investigator wishing to use ECET’s service, please do not hesitate to contact Sebile Tchaicha, ECET Project manager.
Experts from these institutions constitute the driving task force of ECET:
- Allgemeines Krankenhaus Wien/Medizinische Universität Wien, Vienna, Austria
- Christian Doppler Klinik, Paracelsus Medical University, Salzburg, Austria
- University Hospitals, Leuven, Belgium
- Hôpital Universitaire des Enfants Reine Fabiola (HUDERF), Belgium
- Hôpital Erasme, Belgium
- UHC Sestre milosrdnice, Zagreb, Croatia
- University Hospital Centre Zagreb and School of Medicine, Croatia
- The Cyprus Institute of neurology and genetics, Cyprus
- Brno Epilepsy Center, Czech Republic
- Motol University Hospital, Czech Republic
- University Hospital Rigshospitalet, Denmark
- Children’s Clinic of Tartu University Hospital, Estonia
- Epilepsy Center, Kuopio University Hospital, Finland
- Oulu University Hospital, Pediatric Neurology Unit, Finland
- Helsinki University Hospital, Finland
- CHU Lille, France
- Necker Enfants Malades Hospital, Paris, France
- Robert-Debré University Hospital, Paris, France
- Salpêtrière Hospital, Sorbonne University, Paris, France
- Hospices Civils de Lyon, France
- Assistance Publique Hôpitaux de Marseille, France
- University Clinic in Tbilisi, Georgia
- University Berlin Charite, Germany
- Department of Epileptology, University Hospital Bonn, Germany
- University Hospital Heidelberg, Heidelberg, Germany
- Hertie Institute for Clinical Brain Research, University of Tuebingen, Germany
- Epilepsy-Center Berlin-Brandenburg, Germany
- National Institute of Mental Health, neurology and Neurosurgery
Infant Research Centre, Hungary
- IRCCS Istituto delle Scienze Neurologiche, Azienda USL di Bologna, Ospedale Bellaria, Italy
- ASST Santi Paolo Carlo-San Paolo Hospital, Italy
- Claudio Munari Epilepsy Surgery Centre, Niguarda Hospital, Milano Italy
- Fondazione IRCCS Istituto Neurologico Besta, Italy
- Agostino Gemelli University Policlinic, Rome, Italy
- Azienda Ospedaliero-Universitaria Meyer, Italy
- Bambino Gesù Children’s Hospital, Rome, Italy
- Fondazione Mondino, Italy
- Azienda Ospedaliera Universitaria Integrata di Verona Italy
- Children’s clinical university hospital, Latvia
- Vilnius University hospital Santaros Clinics, Lithuania
- Hospital of Lithuanian University of Health Sciences, Lithuania
- Mater Dei Hospital, Malta
- University Medical Center Utrecht (UMCU), The Netherlands
- National Centre for epilepsy, Norway
- The Children’s Memorial Health Institute, Warsaw, Poland
- Medical University of Gdańsk, Poland
- Centro Hospitalar Universitário Lisboa Norte, Portugal
- Centro Hospital Universitário do Porto, Portugal
- Centro Hospitalar e Universitário de Coimbra, Portugal
- University Medical Centre Ljubljana, Slovenia
- Queen Elizabeth University Hospital – Glasgow, Scotland
- Royal Hospital for Children, Glasgow, Scotland
- Hospital Clinic Barcelona, Spain
- Hospital Sant Joan de Déu, Barcelona, Spain
- Hospital Universitario y Politecnico La Fe Valencia, Spain
- University of Gothenburg, Sahlgrenska, Sweden
- Centre Hospitalier Universitaire Vaudois – Lausanne, Swizerland
- John Radcliffe Hospital/University of Oxford, UK
- Great Ormond Street Hospital, London, UK
- University College London Hospitals NHS Foundation Trust, UK
