|Bernardo Dalla Bernardina
Nova Scotia, Canada
Buenos Aires, Argentina
- To promote knowledge of childhood-related epilepsy issues around the world, both at a scientific and a healthcare level.
- To contribute to the nosology of childhood epilepsy through international workshops of experts.
- To contribute to research on the etiological bases of childhood onset epilepsy through networking of research centers.
- To establish standards and guidelines for medical and surgical treatment through consensus meetings of international experts comparing different cross-cultural experiences.
During the last mandate the commission has been working on several issues.
- After initial difficulties, commitments have been shared for the preparation of the algorithms for diagnosis and treatment of childhood epilepsy, under the assignment that was received from the WHO and the auspices of the Global Campaign (Pete Engel). After a year and a half of work, Guidelines for Neonatal Seizures were finalized. The final discussion was held at the last meeting of the Pediatric Commission at the Paris ILAE Congress. Participants in the working group for the neonatal seizures guidelines included R Guerrini, P Plouin, E Mizrahi (Commission members), John Co (group coordinator and hired expert on guidelines) and Maurizio Elia (on behalf of the Institution sponsoring the WHO initiative). Guidelines were sent to Dr Prilipko (WHO) who declared they will be tested during a pilot study in a developing country before being accepted. He also said his term is expiring so he does not know for sure who will be involved in this initiative on the WHO side. The Commission is now waiting further communication from WHO and the Global Campaign coordinator before investing energies in the guidelines for infants and older children, as previously planned.
- The 2004 Venice summer school was devoted to epilepsy in children and the plan for the course was prepared by R Guerrini, G Avanzini and N Moshé. Several Commission members participated in the course as teachers and tutors and gave their input. This course has given wide space to the interactive sessions in which Commission members will be heavily involved. More than 40 international participants were admitted. A special innovative initiative during the course was a one-day Pediatric Commission Workshop on Neonatal Seizures (coordinated by Mizrahi). During the workshop, there was an interactive video session with all course participants. Discussions that emerged from the meeting were incorporated within the framework of the guidelines for WHO.
- During the week preceding the Lisbon International Epilepsy Congress, a workshop on Pediatric Epilepsy Surgery was held in Dordogne, France, that was organized by H Cross and O Delalande for the Subcommission on Pediatric Epilepsy Surgery. This Subcommission is transversal to the Epilepsy Surgery Commission and the Commission on Pediatrics. R Guerrini was invited for the Commission on Pediatrics and made the meeting conclusions. H Cross prepared a consensus report after the meeting. Members of the Subcommission on Pediatric Epilepsy Surgery and the Commissions on Pediatrics and Neurosurgery contributed to the manuscript, which is now being examined by the ILAE Executive to be published in Epilepsia as a joint report of the three aforementioned commissions.
On 19 November 2004, a one-day workshop on the Nosology of the Epilepsies in the First Three Years of Life was held in Pisa, again under the auspices of the Commission on Pediatrics. This meeting has in part continued the work that was started in Venice and expanded it to include infants and young children.
A meeting on the nosology, pathophysiology and medical and surgical treatment of infantile spasms is planned for September 2006 in Verona, Italy. It will be coordinated by B Dalla Bernardina, R Guerrini and others. It is hoped that the newly appointed Commission on Pediatrics will be available to provide its input to this meeting, whose aim is to produce a consensus for the purpose of updating the nosology of infantile spasms, in view of the most recent reports on genetics, prognosis and surgical treatment.
Additional End of Term Considerations
- In general, the Commission faces several difficulties in organizing its work. The main reason is linked to the presence of pediatric issues within a number of other commissions, with consequent duplication or, alternatively, fragmentation of work. For example, pediatric neurosurgery, diagnostic strategies, genetics and neuropsychology issues should ideally be within the Commission on Pediatrics and not as subsections of the commissions on those topics. For the time being, it should at least be granted that all activities that have as the main target the pediatric age should be communicated to, and coordinated with, the Commission. If we wish to stimulate research and communication, we should first of all do it in house. Such difficulties are rather unique to what looks like the most transversal of all commissions, and I am asking to reinforce its weight and specificity, which seems now too scattered.
- The most important activity in which the Commission is now involved is the preparation of the WHO Guidelines for the Diagnosis and Treatment of Childhood Epilepsy. After facing some difficulties that have, unavoidably, caused wasting of time, it seems we have now found a right direction. Dr Co from Boston, a specialist in guidelines, has been hired to interact with Commission members to prepare the algorithms for the guidelines, to be used as the basis for more extended documents. As agreed upon in previous meetings, we have identified the age range targets for the document and are now proceeding. We hope we will be able to deliver the guidelines, realistically, within 1 to 2 years and consider this as a potential major achievement. Based on those guidelines, we strongly encourage the ILAE to establish them as an endpoint to undertake initiatives for dealing with the treatment gap. In particular, guidelines on treatment for children might represent a recognizable indicator for the minimum standard for treatment in developing countries (and not only!) and the basis for negotiating with the industry availability of identified essential drugs at lower costs.
- The experience with the international courses held in Venice has been extremely positive in terms of educational value and research networking. My impression is that ILAE should commit itself to organizing a yearly basic (not basic science) educational course on childhood epilepsy in every continent, chaired by local specialists but with an international faculty, following the same interactive style that characterizes the Venice courses. Long distance education is certainly cheaper and less expensive but will never convey as much education as true interactive initiatives do.
Renzo Guerrini, Chair