Jayne Bressington, Patient Director of the PAWS-GIST Initiative & Trustee of GIST Support UK
The first national Pediatric, Adolescent, Wild-type and Syndromic GIST (PAWS GIST) clinic in the United Kingdom was held on March 28, 2014 at Addenbrookes Hospital in Cambridge, England, where a team of specialists from around the UK reviewed the individual health of the first group of ten patients diagnosed with this rare cancer of the digestive system. The aim of the clinic, which is sponsored by Cambridge University Hospitals and GIST Support UK, is to concentrate expertise in one national center to build a detailed understanding of this rare cancer.
Each patient was given a personal consultation and treatment plan. Much was learned, and patients expressed huge gratitude for this focus on their specific cancer.
Origins of the PAWS-GIST Clinic
The idea for the clinic first started four years ago when a young patient’s mother from Bristol first approached Dr. Ramesh Bulusu after her daughter was diagnosed with PAWS GIST. The inspiration came from a visit to the Pediatric Wild-type GIST clinic in America at the National Institutes of Health. The PAWS-GIST clinic is only the second clinic of its type in the world.
Dr. Ramesh Bulusu, who is the lead clinician explains:
“There will be three clinics each year. We will not be taking over the medical care of the patients attending our clinics, but hope to make recommendations based on the information that we gather. In addition, we may be able to offer services or tests that are not available locally.
Oncologists in other parts of the country have not been able to gain enough experience of this disease as they only see one or two patients a year. Creating this national clinic and a network of cancer specialists will improve our 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 center of expertise to assist in designing the best and most effective therapy and treatment for each individual patient.”
Second clinic held in August
The second clinic took place in early August, and involved seven female patients, five in the age range of 16-25, and two aged 25 plus from a variety of UK locations. For many, this was the first time they had met another patient diagnosed with PAWS-GIST cancer.
Valuable conversations and connections were made at the welcome meal hosted by GIST Support UK on the evening before, and during the clinic. Having broken the ice and shared experiences, our patients met with the team of PAWS-GIST specialists for their individual consultations.
During the consultations they discussed their individual case history, asked any questions they had, engaged with the specialist geneticist, and received recommendations designed to optimize management of their treatment and make life as normal as possible.
National Register and Tissue Bank
Patients attending the clinic are registered on the “National GIST Register” and where tissue samples exist, are invited to consent for their samples to be sent to and registered with the “National GIST Tissue Bank.” They also have access to the latest forms of genetic diagnostic testing for inherited forms of GIST and the opportunity to join state-of-the-art research studies into genetic aspects of GIST.
To date, eighteen PAWS-GIST patients have now attended a clinic and are part of the initiative to build a PAWS-GIST patient dataset in the UK. This will be used to build expertise and understanding of the causes and mechanisms of GIST in children, young people and all with Wild-type GIST and identify specific and effective treatments.
The clinic hopes to work with the specialist clinic at the NIH in America, and with GIST experts throughout Europe to improve treatments and to find a cure for PAWS-GIST.
Applications to attend the next PAWS-GIST clinic should be made via the clinic website: www.pawsgistclinic.org.uk which also contains a wealth of information for patients, their families and those who are keen to support this ground-breaking initiative.
If anyone you know has been affected by GIST, please refer them to our clinic and also to GIST Support UK, who work to help and support GIST cancer patients and advance understanding of this rare disease: www.gistsupportuk.com