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Officially entitled Osseus (bone) Complications in Gauchers Disease: a national survey and intervention study starts this autumn funded by the Gauchers Association. Jane Tindall has been employed as the Senior Research Nurse to work on the three year study which will involve UK patients in all the four national Gauchers Centres.
A new Bone Research Study has started in September this year funded by the Gauchers Association. It will be a three year project and patients from all four Gauchers Centres are being invited to take part.
'The reason for doing the Study is because we still do not yet know what is the specific cause of bone complications especially joint disease and osteoporosis (bone thinning) in Gauchers disease,' says Prof Timothy Cox who will be responsible for co-ordinating the Study.
'The more we are able to learn, the more likely we will be able to prevent and possibly treat these problems. 'The Study is entirely voluntary and, if patients wish to participate, will take place alongside their routine clinic appointment so they will not have to attend on separate occasions. 'It will involve completing a questionnaire with one of their doctors or nurses each time they attend. In addition, an extra blood sample together with routine tests will be taken so no additional discomfort will be felt.
All information obtained will remain confidential.' A letter and patient information sheet inviting patients to enter the study is being sent out to patients. If they agree to enter the Study, they will be required to sign a Consent Form.
There will be no pressure for patients to participate and if they do not wish to take part, their regular care will not be affected.
The Gauchers Association will be supplied with yearly reports on the progress of the Study. Prof Cox says: 'I am very optimistic that we will be able to make a valuable contribution to the understanding, management and care of patients afflicted by Gauchers disease particularly as it affects the skeleton of the young and older sufferers alike.
First Phase of Study
'The first phase of the project is to document, codify and demonstrate the different types of bone disease affecting children and adult sufferers with Gauchers disease and to put in place the best means to evaluate these changes with a view to early treatment. 'The correlation of the bone changes with other manifestations of Gauchers disease activity will also be investigated in which it will, in part, be possible to build on the excellent scientific studies carried out by Dr Mary Teresa Moran (which was partly supported by the Gauchers Association 1997-2000). 'An update on the plans for the project will be presented at the forthcoming Conference of the Association to be held in Manchester.'
Gauchers News Contents
Source: Gauchers News October 2003.
© Copyright Gauchers Association Ltd 2003.