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What is DESIRE?
Epilepsy is a condition which affects over 6 million persons in Europe. Among these are 100 000 children who are diagnosed annually with epilepsy. Currently available antiepileptic drugs (AEDs) have not been found to prevent the onset of epilepsy, or to alter the natural course of the disease, and the effect of the medicines we have to date is essentially symptomatic.
DESIRE is an EU funded project which has brought together a critical mass of researchers from 26 different institutions in Europe.
These researchers are using these EU funds to focus on types of epilepsies which have proven to be very difficult to treat ie epileptogenic developmental disorders (EDD), i.e. early onset epilepsies whose origin is closely related to developmental brain processes. EDD are the most frequent drug-resistant pediatric epilepsies and they carry a lifelong perspective of disability and reduced quality of life.
A major cause of EDDs are malformations of development of an important part of the brain – the cortex. EDDs are often manifested as conditions in which epileptic activity itself may contribute to severe cognitive and behavioral impairment in the child. These are called epileptic encephalopathies.
What are we researching in DESIRE?
EDDs collectively represent a major medical and socio-economic burden and yet their diagnosis, what is happening at a basic cellular level and how best to treat are poorly understood.
Thus the main aims of DESIRE are to research:
- the possible genetic causes of EEDs and understand what is happening at a molecular and protein level in the brain in these conditions
- to find new diagnostic tools (biomarkers) and protocols by studying children with EDDs and thus to provide standardized diagnosis research across Europe.
- To find new treatment for EDD using clinical protocols and novel preventative strategies.
Who is involved in DESIRE?
DESIRE is an EU FP7 funded project, involving 26 partners in 11 countries, with eight third parties, more than 250 researchers involved and 19 clinical centres involved in the clinical trial. It is co-ordinated by Prof. Renzo Guerrini, Dipartimento di Neuroscienze, Area del Farmaco e Salute del Bambino (NEUROFARBA) Universita degli Studi di Firenze, Italy.
These consortium partners have an excellent track record in genetics, basic neurophysiology, neuropathology and clinical research. Specialized expertise will also be made available by the SMEs involved to help develop novel diagnostic tools for tailored treatment approaches.How can patients can contribute to DESIRE?
You can do so by contacting one of our partners (see our participants page for a list of participants across Europe) and ask whether it would be possible to participate in one of the various clinical trials. You or your child can participate in these trials if you have epilepsy, by providing blood samples, by participating in the treatment trials, by making our project known to other patients and representatives and if you wish by donating money for further research.If you are interested to learn more about DESIRE, please contact:
Prof. Janet Mifsud, firstname.lastname@example.org Department of Clinical Pharmacology and Therapeutics, University of Malta - member of DESIRE WP7, Dissemination and Exploitation.