This project funded by the European Commission aims to improve and provide information about genetic testing and research in Europe and you can help.
EuroGenGuide would like to know about your experiences that you and your family have had concerning genetic testing for CGD and the counselling you received with this test. For example, you may have been given helpful and good advice, or have received good treatment from health professionals. Or, perhaps you have taken part in a research project and want to share your thoughts on the process and feedback given.
The project is aimed at patients and members of the public, and doctors and researchers alike with the intention of enabling people to make an informed decision about taking a genetic test, or, for example donating DNA samples for use in genetic research programs. Your experiences will help in the development of guidelines and protocols so that other patients can take part in research knowing what the benefits may be.
With input from many other patient organisations the project hopes to increase the scale of research for the development of treatments for genetic disorders. On completion, in 2009, the EuroGenGuide will provide public information, and practice guidelines for professionals and will be backed up by an interactive website where clinicians, patients and members of the public can keep up to date with recent news and developments in the field of genetics from around Europe.
For further information on this project or to contact Alex McKeown, the project officer of the Eurogenguide at the Genetics Interest Group visit http://www.gig.org.uk/.
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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