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 funded a collaborative project between Newcastle General Hospital and Great Ormond Street Hospital to establish a comprehensive database, or registry of information of CGD patients within the UK and Ireland.
With the help of the CGD nurse and questionnaires sent to patients, their families and doctors, a 'snapshot' picture of the incidence of CGD in the UK and Ireland has been now obtained and stored in a central database currently held at Newcastle General Hospital. This provides detailed information on the course of the disease, 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.
To establish a wider base of information we have also funded research into the incidence and treatment of CGD in Europe. This research is being done at the Central Laboratory of the Netherlands, based in Amsterdam. Eight European centres were visited by a clinician and in total, clinical data were gathered from 429 CGD patients, living in 17 European countries.
Long Term Aims
The information held within the European and UK based registries will be pooled. This will form a statistically important registry that can be used to develop powerful conclusions about the CGD community in a large number of countries. This will enable CGD patients to benefit from experience in other countries. We envisage that once compiled the combined database, that protects the anonymity of patients, will be available to all consultants that treat CGD patients and will be used as a point of reference for the treatment of CGD. It is hoped that all the information will be incorporated into the European Society of Immunodeficiencies’ Registry which will contain information on CGD from all around the world.
The results from the Registries have been presented at many national and international and will be published in a high impact scientific journal in the near future. This will be the first comprehensive published of CGD within the UK and Europe.
PublicationsIMPORTANT 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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