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Information Officer Report

Simon Shorvon

A lot of work was been devoted this year to developing the International League Against Epilepsy’s website www.epilepsy.org). The site has two main functions. First, to provide information about the ILAE and assistance on ILAE matters to ILAE members, and to the ILAE administrative bodies. The second purpose is to provide information about epilepsy for professionals worldwide, and over time to become an important epilepsy portal.

The website is overseen by a task force who advise on the content and the functionality of the site. The task force collaborates with Mr. Joe Wall in the ILAE Hartford office who is responsible for implementing the decisions of the committee and for the general development of the site. In the past few years, the committee and the team in Hartford, under Mr. Wall, have made great progress in establishing the website as an important element of the work of the ILAE.

The task force has overseen a major redesign and restructuring of the website. A new logo was adopted by the ILAE in April 2003 and is at the head of the homepage which has been redesigned to show highlights, news items, details of future congresses and other topical matters. There are also links to the IBE, ILAE congress sites and other
epilepsy-related sites. The site is well ranked in the major worldwide search engines.

This site content has been added in two stages. In Stage 1, ILAE-related information has been assembled and added. This includes copies of the ILAE mission and strategic plan, and data on the executive committee, offices, commissions, task forces, publications and congresses. Information regarding the activities of the League’s 92 chapters is also
complete, with individual chapter pages with links to their own websites. An archive section was also created to house non-current reports, annual reports, commission documents, etc. The Stage 1 work is now largely complete.

We are now embarked on Stage 2, the goal of which is to develop the site to provide comprehensive information on epilepsy for the use of professionals around the world. The site will, we hope, evolve into an important worldwide portal for professional epilepsy information. Epilepsy information is mainly contained in a section called Resource Central. Within this section are currently six subsections:

  • An Epilepsy Information Centre (EIC) Section in which there is a searchable index of the 1,300 documents held in the EIC in Zurich.
  • A section with electronic copies of the best of the EIC documents. This is currently being assembled. Some videos and pamphlets are online now, and we plan 50 documents and 25 videos online in the next period. Some are translated into several languages.
  • A list of the drug names/formulations/ preparations in each country around the world, drawn up by Bob Fisher.
  • A selected list of books in print about epilepsy with a brief description. This is now being finalized, and in the future there is the possibility of interactive reviews.
  • A selected list of current journal articles. This is in the process of construction. It is planned to have a list updated regularly with abstracts of the best articles published in epilepsy in the previous month.
  • Selected review articles drawn from the published literature on specific topics within epilepsy (epilepsy/bone disease, epilepsy/neurosystercicosis etc). This is currently in the planning stage.

In addition, there are a number of new behind the scenes features. These include a powerful search engine, password protected areas for ILAE Chapter Officers, an Executive Committee section, and statistical monitoring to provide details of visits. A legal disclaimer and privacy policy has also been posted. The templates for individual chapter websites are done and are currently being used by 17 chapters.

Epilepsy Information Centre (EIC)

The EIC has undergone important changes in the past 12 months. This is largely because the EIC has decided to refocus its activities on the provision of information for professional rather than lay audiences, and because the IBE has decided to withdraw its own sponsorship but remain committed to providing information.

These have resulted in important changes in the procedure and focus of the EIC, which have been put in place to link the EIC more closely to the ILAE, and in particular to the ILAE website. The ILAE website now acts as the main outlet for EIC information provision and databases. The EIC and the website will both closely work towards the ILAE goal of being a major information portal on epilepsy information for professionals and for members. The collection of more than 1600 documents in Zurich, which has been accumulated in the past few years, remains an important resource, and additions to this collection will be actively sought. Currently, the most important of these documents are being digitized for posting on the ILAE website. The EIC will continue to update the database regularly. The EIC has also revamped its service for responding to information requests, and this will eventually be entirely online. The EIC also provides the lists of books in print and journals for the website. Also in the pipeline is the possibility of arranging storage of the ILAE archive at the EIC in Zurich. The day-to-day activities of the EIC at the Zurich end are overseen by Ian Mothersill, who has worked tirelessly in a voluntary capacity on this project supported by Ms. Haagii.

Simon Shorvon
Information Officer


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