The big idea behind IDEE : to fight epilepsy
on all fronts
and give everyone something to smile about.

IDEE is an innovative project, founded by four renowned epileptologists.
Their ambition is to bring together, on one site, all the necessary elements to:

• Manage childhood and teenage epilepsies in a comprehensive and optimal way ;
• Advance clinical and basic research, through close day–to-day collaboration between clinicians and researchers;
• Promote the technological development of therapeutic advances through partnership with industry and businesses .
• Work with groups of patients and their families to better respond to their need for support and educational and social integration ;

Widely supported by all the organisations involved in this challenge, as well as international experts, institutions and local and national politicians, IDEE will be unique in Europe.
Thanks to the dedication of the doctors, researchers and organisations who will work in the institute, we will be able to offer a comprehensive management programme and quick access to optimal quality care in France to the thousands of children and teenagers who suffer from epilepsy.

Our objective: giving the largest number of people with epilepsy the speediest recovery and protection or restoration of their intellectual abilities.

As a result of the quality of the scientific projects already underway, IDEE was one of the five projects labelled a CTRS (Centre Thématique de Recherche et de Soins – Thematic Research and Care Centre) in July 2006 by INSERM.

IDEE will be an exceptional institute incorporating: major medical and surgical advances, high performing treatments, commercial therapeutic development and well developed social support. IDEE will be a new, universal and innovative model of healthcare management, applied to epilepsy in children and teenagers.

A medical centre,
for better quality care.

Sufficient resources to meet medical and social challenges:

There are two main objectives for patient care:

• To optimise the care of children and teenagers, notably the evaluation and management of possible intellectual difficulties associated with epilepsy.
  A challenge which can be met through multidisciplinary medical care.
• To offer rapid access to a thorough pre-surgical examination to people suffering from partial drug-resistant epilepsy.
  IDEE represents the biggest paediatric pre-surgical evaluation programme in the world, with the capacity to receive children from all European countries. Partnerships have already been established with specialised services in Europe.
  The complete pre-surgical examination will include :
  - a complete neuropsychological examination
  - long-term recordings by video-EEG telemetry and, where necessary, by stero-encephalography (SEEG) carried out in IDEE;
  - medical expertise by a highly specialised team.

	A centre at the cutting edge of technology Close proximity to the CERMEP (Centre d'Exploration et de Recherche Médicales par Emission de Positons) and the Neurological Hospital will facilitate access to cutting-edge neuro-imaging equipment and any other examination which is deemed necessary. In the medium term, the institute will equip itself with its own high-field MRI.

A research centre,
the source of major discoveries.

IDEE will give researchers the means to further their knowledge of epilepsy, overcome associated intellectual difficulties and open new therapeutic avenues. The Centre Thématique de Recherche et de Soins already brings together 7 projects developed by more than 40 experienced researchers, post-doctoral staff and doctoral students, working in 10 research centres in Lyon, Paris, Strasbourg, Grenoble and Marseille.

Two main challenges for the teams:

• Research carried out in the IDEE Institute will aim to improve understanding, treatment and prevention of intellectual difficulties seen in children and teenagers with epilepsy.
• The research work will be led in close collaboration with medical teams, to best respond to patients’ needs in order to benefit from the most promising discoveries without delay.

This research will lead to numerous scientific publications which will place France among the world leaders in the field of research on childhood epilepsy.

	7 research projects Validation of an early and robust electrophysiological marker of cognitive dysfunction with the aim of better defining the best anti-epileptic treatment, and the optimal age and procedure for undergoing surgery. This method will be particularly useful for the development of new anti-epileptic agents. Further knowledge of socio-cognitive disorders, language and reading will enable the development of new compensatory therapies for managing the socio-educational difficulties in children with epilepsy. Wide epidemiological study providing a precise picture of the depth of cognitive dysfunction in the entire population of children with different forms of epilepsy, as well as the impact of improved care. This information should help medical authorities to better adapt the national organisation of care to the needs of patients. Identification of genetic risk factors of developing cognitive dysfunction, either as a consequence of epilepsy, or in response to anti-epileptic treatments, with the aim of adapting the therapeutic strategy to optimise the care of high-risk patients. Development of innovative tools to improve identification of cerebral zones at the origin of epileptic seizures, thus maximising the outcome of pre-surgical reports and post-operative results on epileptic seizures. Experimental programme in neuro-protection and closed loop stimulation with the aim of developing innovative therapeutic strategies against epilepsy using targets and procedures already used for other pathologies that can be rapidly tested in patients suffering from epilepsy.

An evaluation centre,
to promote technological and therapeutic advances and participate in local and national economic development.

Pharmaceutical collaborations bring hope.
The founding epileptologists of IDEE have already put into place significant collaborations with the big pharmaceutical companies, including world leaders: Pfizer, UCB pharma, GSK, Sanofi-Aventis, Johnson & Johnson, Novartis, Eisai…
These collaborations include the co-ordination of national and international clinical trials on anti-epileptic medication (Phases II, III and IV), to compensate for the current lack of clinical trials in children and develop therapies better suited to their needs.

Already, long-term collaborations have been developed with different companies to design equipment for the diagnosis and treatment of epilepsy. Among them, a biotechnology company, that will collaborate closely with IDEE, is offering a pre-clinical evaluation service of potential medication for the treatment of central nervous system disorders.

To be in direct contact with doctors and patients, these companies will have a dedicated space within the IDEE institute and will provide appropriate equipment and techniques at the cutting edge of technological innovation.

	A project on the road to success Améthrine is a company created by the founding epileptologists of IDEE with the aim of developing an innovative system for automatic video recording of epileptic seizures at home. This project was shortlisted in the “national competition for new innovative enterprises” in 2004 and 2006, developed by CREALYS within Rhône-Alpes Ouest, and since December 2006, is located in Lyon’s Bioparc . Amethrine will join IDEE when the institute opens..

A resource centre,
to respond to the support needs of patients and their families.

The Épilepsie-France association aims to develop and support action for a better, more comprehensive management of epilepsy. It has started taking steps towards creating, in the heart of IDEE, a resource centre for childhood and teenage epilepsy; the Centre de Ressources des Épilepsies de l’Enfant et de l’Adolescent (CRÉEA). .
The CRÉEA will be a centre for screening, counselling, assistance, support, training, information, advice, expertise and coordination for the benefit of children and teenagers with epilepsy and their families, but also for other establishments, administrative services and public organisations.
The existence of such a centre, in the heart of the IDEE, will promote communication between professionals, patients, families and the wider public.

Putting patients at the heart of IDEE, is the principal aim of the founding members of IDEE.

Visit patient organisation sites :

• EPILEPSIE-France
• AISPACE
• International Bureau for Epilepsy (IBE)