In 1999 there was no central source of information in the UK about the CGD population, the problems patients face or the success of different treatments. Consequently, the CGD Research Trust has invested over £210,000 in developing a comprehensive database, or registry of information of CGD patients within the UK and Ireland.
The 'snapshot' picture of the incidence of CGD in the UK and Ireland has now been published and provides detailed information on the course of the disorder, and will improve our understanding of the prevalence of the condition and contribute to the improvement in diagnosis, treatment and prevention of clinical complications that can occur in CGD.
You can access the paper at the following weblink: www3.interscience.wily.com/journal/119389133/abstract
The editors of the journal Clinical and Experimental Immunology stated 'This is a landmark publication because it provides important comprehensive information - previously lacking - on the clinical course, complications and risks of CGD. Discovering for the first time how patients with CGD in Britain and Ireland are doing should allow us to plan for future treatments to improve the health of patients with CGD.'
Dr Andrew Gennery of the CGD Registry team at Newcastle General Hospital comments 'The funding role of the CGD Research Trust was critical. It can be difficult to obtain funding for these sorts of registry projects and particularly for a 'rare' disease like CGD. Without funding from the CGD Research Trust this work would not have been performed. The key messages from the study are that there should be no complacency and there is still a lot of work to do in treating and caring for patients with CGD. We need to find new ways of treating and preventing inflammation. We hope that with the information we have gained we can make further advances in diagnosis, treatment and cure of patients with CGD and so continue to improve their lives', said Dr Gennery.
European registry
To establish a wider base of information we have invested £98,000 into developing a registry of information on the incidence and treatment of CGD in Europe. This research was done at the Central Laboratory of the Netherlands, based in Amsterdam. Eight European centres were visited by a clinician and in total, clinical data was gathered from 429 CGD patients, living in 17 European countries.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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