Type 3 Consensus Task Force

Neuronopathic Gaucher's News Contents

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At the third Scientific Meeting of the European Working Group for Gauchers Disease (EWGGD) in Lemnos, Greece in May 1999, Tanya Collin-Histed proposed that a consensus meeting be initiated on how to treat Type 3 Gaucher's disease sufferers. She writes:

The main reason for proposing a consensus meeting for Type 3 is to encourage professionals all over the world to develop a standard set of procedures on how to treat individuals suffering from Type 3 Gaucher's disease, with the emphasis on the level of enzyme replacement therapy to be prescribed.

Concerns are that there seems little agreement on the methods of treating Type 3 patients and dosage levels vary significantly between treatment centres. In addition Cerezyme is not yet licensed for treatment of Type 3 patients.

It is hoped that reaching a consensus will be beneficial in securing treatment for Type 3 sufferers as well as enabling them to obtain reimbursement costs.

The proposal to hold a Consensus Meeting was enthusiastically supported by the Steering Committee of the EWGGD; and a small European Task Force has been formed to draft some initial proposals that should be the topics for discussion by all Type 3 Gaucher's disease treating clinicians.

Dr Ashok Vellodi (Great Ormond Street Hospital for Children, UK) will chair the Task Force and members will include Dr Anders Erikson (University Hospital of N Sweden) and Dr Hans Aerts (University of Amsterdam, Holland), who is the Chairman of the EWGGD. I have been asked to represent patients with Type 3.

Initially the Task Force will look at three key areas: diagnosis, enzyme replacement therapy and long term clinical management.

The proposals will then be widely distributed and will be presented for discussion and agreement at an international meeting later this year.'

Management of Neuronopathic Gaucher Disease: A European Consensus

Neuronopathic Gaucher's News Contents

Gaucher's News Contents