CMN Research at Great Ormond Street Hospital for Children, London
Research into CMNs at Great Ormond Street Hospital for Children (GOSH) was started around 20 years ago by Dr. David Atherton, who has now retired. Dr. Veronica Kinsler has been involved in this research since 1998, and now works with Professor Raoul Hennekam, Professor of Clinical Genetics at Great Ormond Street. Since June 2006 Caring Matters Now patient support group has funded Dr. Kinsler (who works part-time because of family commitments) to do a research degree into CMNs. This allows Dr. Kinsler to dedicate all 20 hours a week to the research.
GOSH has been keeping a Registry database of people with CMNs since 1988, and now numbers 450 members. This has been a vital source of information to help work out what are the real long-term complications of CMNs, and how often they occur. It has also helped to change the management of CMNs. In order to improve the quality of the information in the Registry anyone new who wishes to join has to be seen at least once by Dr. Kinsler at Great Ormond Street. Being involved in the Registry project thereafter involves filling in a postal questionnaire once a year.
The research is currently focusing on why a particular person develops a CMN. The more patients and families Dr. Kinsler can see, talk to, and enrol in the studies the better. Larger studies will give more meaningful results. As a result Dr. Kinsler will see any child (under 17 years) with a CMN in the dedicated clinic at GOSH, but this requires a referral from your GP to Dr. Kinsler. In addition at the moment (2009-2010 at least) anyone who has ever been seen at GOSH for their CMN, even if they are now over 17, or anyone who specifically wants to be enrolled in the research studies can be seen for a single appointment by Dr. Kinsler in a separate research clinic. This does not require a GP referral, and a letter can be sent directly to Dr. Kinsler by the person or family at the following address: Paediatric Dermatology Department, Great Ormond Street Hospital, London WC1N 3JH.
The results of our research are reported annually to Jodi Unsworth and the Committee of Caring Matters Now. We also update patients involved in the research when we see them in the clinic, and formally at the end of the study. Once results are ready for publication in medical journals they will be posted on the website.
Dr. Kinsler would like to thank everyone involved in Caring Matters Now for funding this important research, and everyone involved in the studies for taking the time to contribute.
CMN research update: 1st May 2007
CMN research update: 16th April 2009
CMN research update: 15th July 2009
CMN research update: January 2010
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