The third Paediatric, Adolescent, Wild-type and Syndromic GIST clinic was held at Addenbrookes Hospital, Cambridge on Friday (21st November 2014).
This clinic involved six patients, x4 female and x2 males from locations across the UK.
GIST Cancer UK hosted an informal welcome meal on the evening before the clinic so that we could all get to know one another. Some of our patients have been struggling with this disease for several years while others had only recently been diagnosed.
The clinic day consisted of consultations with the specialist team lasting a minimum of one hour per patient. This opportunity to discuss individual cases, ask questions and receive personalised treatment path recommendations was for most a welcome relief providing options and advice that had not previously been considered.
All clinic participants are registered on the National GIST register and are invited to consent for any GIST tissue samples that exists to be sent to/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.
This third clinic brings our patient numbers up to twenty-four this year and continues the development of the PAWS-GIST patient dataset in the UK.
We are planning to hold the next PAWS-GIST Clinic in April 2015 and are continuing our quest to understand the causes and mechanisms of Gastrointestinal Stromal Tumour in children, young people and all with wild-type GIST.
Applications to attend the next PAWS-GIST clinic should be made via this website, which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.
GastroIntestinal Stromal Tumours affect 600-900 new patients in the UK each year c15% are estimated to be PAWS-GIST patients.
If anyone you know has been affected by GIST please alert them to our clinic and this website (www.pawsgistclinic.org.uk) and also to GIST Cancer UK who are working to help patients and advance understanding of this rare disease (www.gistcancer.org.uk).
