News from the Gauchers Centres

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The Gauchers Centres, designated by the Department of Health and receiving special government funding, have been running for over a year. There are now two adult centres and two for children: listed opposite. Prof Timothy Cox who heads the Gauchers Centre at Addenbrookeµs Hospital Cambridge, spoke in January 1998 to doctors and directors of health from local health authorities outlining the aim and benefits of having such specialised centres:

These Centres will provide advice to clinicians who are caring for patients with Gauchers disease, take on the initial assessment of newly-diagnosed patients, provide advice on management including optimum dose of therapy, and review patients on a regular basis with treatment adjustment if necessary.

The Centres can also provide in-patient management for acute or severe complications.

It is the aim of the four centres to establish a National Register of patients to determine prevalence, incidence and responses to treatment as well as monitoring adverse events and severity distribution.

Enzyme Replacement Therapy

Gauchers disease affects many parts of the body. We have found that enzyme replacement infusions:

National Service

A National Service for Gauchers disease should improve the care and outcome for patients by providing uniform clinical standards. It should also improve access to treatment before disease complications are established and identify patients who may benefit from newly-evolving treatments.

Finally it should facilitate the development of clinical research programmes.

Drug Costs Excluded

These national arrangements are not at present funded to provide drug treatment costs. The existing arrangements for prescribing Cerezyme and Ceredase remain as in the past.

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Source: Gauchers News July 1998

© Copyright Gauchers Association 1998