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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

Experts from these institutions constitute the driving task force of ECET:

  • University of Gothenburg, Sweden
  • University College Cork, Ireland
  • West Glasgow ACH-Yorkhill, UK
  • Great Ormond Street Hospital for Children NHS Foundation Trust, UK
  • Children’s Hospital A. Meyer, Italy
  • University Hospital Berlin Charité, Germany
  • Kuopio University Hospital, Finland
  • UCL Institute of of Neurology, UK
  • University Hospitals KU Leuven, Belgium
  • APHP Necker-Enfants Malades, France
  • Hospices Civils de Lyon, France
  • Centre hospitalier universitaire vaudois, Switzerland
  • Mondino National Neurological Institute, Italy
  • Bambin Gesu Children’s Hospital, IRCCS, Italy
  • University Hospital RWTH Aachen, Germany
  • Paracelsus Medical University Salzburg, Austria
  • Hospital Universitario y Politécnico La Fe, Spain

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.