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West Syndrome

Internet-based Prospective Database for Children with West-Syndrome

St.A.König, M.Teich, O.Debus*,G.Kurlemann*, P.Dobson**, J.Taylor**

*University-Children's Hospital Mannheim and Münster

**USQ Toowoomba, Australia

INTRODUCTION

Many aspects of the epidemiology, therapy, success rates and side effects in children with West-syndrome are not known; there is no established and optimized standard-therapy.

A systematic follow-up of as many children with West-syndrome as possible could be the first step to find the best avaiilable therapy for each individual patient, as it has become possible in pediatric oncology in Germany.

 

DATABASE/PROJECT:

An Internet-based database is introduced, which is easy and quick to use and which demands a realistoc amount of time for anyone willing to participate. Every patient and every institution are assigned a code, personal information is not uploaded to the central server.

Data safety is guaranteed as approved by the University of Mannheim.

Information on the history, underlying disease, psychomotor development, school and profession is asked for. The seizure classification and the EEG-findings are asked for and can also be described in full text. The medication and its effect on seizure control are given as well as possible side effects.

The data are uploaded via the Internet to the central server.

The current analysis of the data is also available via the internet and will be more comprehensive in the future.

Database Brochure

The data of an indivudual patient can be printed out and kept with the paper files if desired. Updates of the software are also possible via the Internet.

The database is meant to grow and change according the needs and thoughts of the participants, all of whom will be co-authors of publications.

 

DISCUSSION:

West-syndrome is a severe epileptic syndrome with a poor prognosis and major impact on the affected children and their families.

Nevertheless, there is no optimized therapeutic regime to guarantee the best possisble outcome in an individual child. We introduce an attempt to find an evidence-based systematic approach to the therapy of West-syndrome.

St.A.König, M.Teich, O.Debus*,G.Kurlemann*, P.Dobson**, J.Taylor**

*Universitäts-Kinderklinik Mannheim und Münster

**USQ Toowoomba, Australien