CMN research update: 1st May 2007
In 2006 I started a dedicated Research post at Great Ormond Street Hospital working with Dr. David Atherton, funded by the Caring Matters Now support group. The CMN clinic was established in June 2006, and has been very successful. It enables us to see familiar patients and their families in a clinic focused on CMNs and the research we are doing, and to allow rapid access to new patients. We have made many new observations about CMNs even in the last year, partly due to seeing just those patients all together.
The first research project to get off the ground has been the genetics project. We are trying to find out if there is a gene that is not functioning properly in patients with CMNs. If we can find this gene it will help us to understand the condition much better, and ultimately to help us find treatments. We have had an amazing response from patients and their families – more than 95% of families asked to join in the research have agreed, which is an incredible statistic for a research project. We have enrolled 55 patients in the study so far, and collected a teaspoon of blood off each. We are expecting preliminary results from the first batch of 48 samples by the end of 2007. Setting up and investigating this study has allowed me to suggest a way that CMNs may have been caused. This new project is currently being developed.
The second project is looking at whether we could eventually use a type of vaccine to encourage the patient’s own body to reduce or reject the CMN. This project is in very early stages and will take a long time to get to a vaccine stage even if it produces good results, because of the rules surrounding new treatments for children. It is however very exciting and again should produce first results throughout the coming months.
Thanks to everyone for their support for this research. It has made a very encouraging start and we aim to continue at this pace.
If you are not yet on the register and wish to be, you can contact Mrs Jan Birley, by post at:
CMN Registry,
Dermatology Unit,
Institute of Child Health,
30 Guildford Street,
London
WC1N 1EH.
