National Collaborative Research

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The UK's four National Gauchers Centres at Addenbrooke's, the Royal Free, Great Ormond Street and the Royal Manchester Children's Hospital have proposed a joint collaborative research project to major on the impact of bone complications on sufferers of Gauchers disease, at the request of the Gauchers Association

This is the next major research project that the Association wishes to fund and it is hoped that enough money can be raised to support this important work. The full cost and details are currently being worked out and will be published shortly.

This has the potential for a wonderful nationwide collaboration,' writes Prof Timothy Cox.

Skeletal disease which occurs in Gauchers disease is complex and probably owes its origin to several distinct disease processes.

It would be of great value to survey the different types of bone disease in relation to their severity and the extent to which they cause disability. This could involve correlation of patients, on an anonymous basis, by age, geno-type, severity and other aspects with and without treatment. It would include a record of diverse events eg infarction episodes (bone crises), fractures and frequency requirement for joint replacement surgery.'

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Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000