A specialist team of experts from across the UK will meet at the Cambridge hospital four times a year from early 2014, running a clinic to review the health of PAWS-GIST patients.
GISTS, or gastro intestinal stromal tumours, are rare cancers of the digestive tract occurring in about 15 people for every million of the population - currently about 700 cases in the UK.
PAWS (Paediatric, Adolescent, Wildtype and Syndromic) GIST is an even rarer subgroup of the cancer among children, which accounts for around 15 per cent of GIST patients. About 100 patients per year in the UK fall into this category.
PAWS GIST is more prevalent among girls and young women than among boys and young men. The illness typically starts in the stomach, where several primary tumours can present themselves at the same time.
Dr Ramesh Bulusu, oncology consultant at Cambridge University Hospitals, will be the national lead consultant. He said: “The idea is to bring expertise to one national centre here at Addenbrooke’s. Oncologists in other parts of the country have not been able to gain enough experience because they only see one or two patients a year. Creating a national clinic and a network of cancer specialists will improve the knowledge about these rare cancers.
“The clinic will offer a new way to overcome obstacles which up until now have prevented the development of new and innovative therapies, as well as offering patients a centre of expertise to assist in designing the best and most effective therapy and treatment for each individual patient.”
Bristol mum Jayne Bressington first approached Dr Bulusu three years ago after her daughter was diagnosed with PAWS GIST, and the idea of the clinic grew from there with the help of charity GIST Support UK.
Dr Bulusu said:: “We would like this to be a Europe-wide initiative and therefore, we have invited specialists around Europe to meet in the first European PAWS-GIST consortium meeting on October 22 to be held in London.”
The PAWS-GIST clinic is likely to commence in the New Year.
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Adrian Ient| Media Relations Manager
Tel: 01223 274433 | Ext: 4433 | 07703 887759.
http://www.cuh.org.uk
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Addenbrooke’s to host new national clinic for rare cancers
18 September 2013
The first ever national clinic set up to investigate rare cancers of the digestive system will be located at Addenbrooke’s.