European Collaboration for Epilepsy Trials

Why create ECET?

European Collaboration for Epilepsy Trials

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

European Collaboration for Epilepsy Trials

ECET Organisation

ECET is governed by Alexis Arzimanoglou and Eugen Trinka, with Reetta Kälviäinen as the treasurer, and Philippe Ryvlin as secretary.

Eugen Trinka

Eugen Trinka

Chair

Alexis Arzimanoglou

Alexis Arzimanoglou

Co-chair

Reetta Kälviäinen 

Treasurer

Philippe Ryvlin

Philippe Ryvlin

Secretary

Sébile Tchaicha

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
  • 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
  • CHU Lille, France
  • Necker Enfants Malades Hospital, Paris, France
  • Hospices Civils de Lyon, France
  • University Clinic in Tbilisi, Georgia
  • University Berlin Charite, Germany
  • Department of Epileptology, University Hospital Bonn, 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
  • Children’s clinical university hospital, Latvia
  • Vilnius University hospital Santaros Clinics, Lithuania
  • Hospital of Lithuanian University of Health Sciences, Lithuania
  • University Medical Center Utrecht (UMCU), The Netherlands
  • National Centre for epilepsy, Norway
  • The Children’s Memorial Health Institute, Warsaw, Poland
  • Centro Hospitalar Universitário Lisboa Norte, Portugal
  • Centro Hospital Universitário do Porto, Portugal
  • Queen Elizabeth University Hospital – Glasgow, UK
  • 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, UK
  • University College London Hospitals NHS Foundation Trust, UK