A poor man lies on the ground, at the bottom of the monumental stairs in the way to the University of Coimbra, writhing and foaming at the mouth. People pass by, look and continue their path. Someone puts a handkerchief in his mouth, to prevent that his tongue would fold back inside and block his respiration. This 1973 image, when I was a young student at Coimbra, is still very vivid in my mind. It was the first time that I heard (and saw) about epilepsy.
The poor man was experiencing a seizure, “le grand mal”. Millions of people, men and women, young or old, everywhere, suffer from epilepsy. For two thirds of them, medication or surgery can prevent the seizures to appear and they can have a normal life; however, for one third, there is currently no hope to be treated efficiently by medication or surgery, having as a consequence painful constrains on their daily lives. If they could have a means to be warned of a coming seizure, they could take action to protect their safety and privacy. This would be an enormous improvement of their lives.
Following my activities as a Professor of Biomedical and Informatics Engineering, in 2007 I had a sabbatical year and dedicated it to organize the consortium and to coordinate the proposal of the EPILEPSIAE project. It was a fascinating challenge to find a name. Firstly, we used the Latin (the language that to a large extend created Europe) word for epilepsy, and then we look for meaningful words for which it could be an acronym. It was a moment of inspiration, because these words should also describe the essential of the project aims. The result: Evolving Platform for Improving Living Expectation of Patients Suffering from IctAl Events.
Today hundreds of researchers worldwide are using the outcomes of our great project: the free computational framework EPILAB for research studies, the European Epilepsy Database with its 275 patients is being commercialized, while Micromed SpA is selling small-sized EEG acquisition devices issued from the project experience.
And we are not stopping here: Each partner of the consortium continues their own research in seizure prediction, researching better algorithms and we continue to exchange experiences and ideas. The possibility to submit a project to Horizon 2020 to continue EPILEPSIAE is in our minds. We hope to be able to do that.
The biggest problem, that could not be solved, has been, in my opinion, finding volunteers to use the prototype of the developed hardware and software (the "Brainatics" tool) in order to have a representative sample. On top of that, the set of regulations and ethical rules that must be followed introduce time delays that are hardly compatible with the projects' timetables. These issues should be worked out in the future and some simplification of the procedures should be made to ease experimental medical research (preserving of course the informed volunteer participation and the safety of the patients). This should be addressed in the Horizon 2020 context. Without real experiments with patients, ambulatory and at home, it is not possible to reach the needed progresses towards a transportable, clinically approved warning device.
To reach results with clinical relevance concerning brain disorders, an immense work is still required. These disorders (chronic or transitory) are becoming the modern epidemics, for which it is necessary to research the adequate diagnosis and treatments. It seems to me that the brain, the part of our bodies we know least about, is the most important part of the human being where investing in research is needed and profitable at long term; with better knowledge the mental conditions of many people (not only elder people) can be substantially improved.
For more information, please visit www.epilepsiae.eu and www.epilepsy-database.eu.
University of Coimbra