Overview - What is happening in the UK
The PAWS-GIST national alliance was formed in the UK in 2010 as a joint effort between patients, carers and health care professionals, to raise awareness, improve treatments, stimulate research, understand the causes and mechanisms of GIST in children, young people and those with wild-type GIST and ultimately to find a cure for this subgroup of GIST patients.
Our clinical lead is Dr V Ramesh Bulusu, Chairman of the Cambridge GIST Study Group, a consultant oncologist and GIST specialist based at the Cambridge University hospital foundation trust in Cambridge, UK. The group's activities are coordinated by Jayne Bressington, a trustee of the GIST support UK.
When we started we created a target list of things to be achieved:
- registration of all UK PAWS-GIST patients/data collection
- mutational testing as standard
- growing wild type GIST cells "in vitro"
- specialist commissioning status
- minimum doctor's data set before seeing patients
- human tissue, biopsy & blood sample management
- specialist PAWS-GIST treatment clinics
- inclusion of Paediatric GIST patients in clinical trials
- breaking down barriers
- research to achieve better outcomes
- a cure
Significant progress has been made
We have established:
- A national GIST tumour bank
- A national GIST register is under construction
- Our clinics are held at Addenbrookes Hospital in Cambridge
- Researchers are attempting to grow Wild-type cells from tissue donated by our patients
- Our fundraising has stimuated and is supporting new PAWS-GIST research projects in the UK
We plan to hold three clinics each year, using each one to bring together up to 8 patients who will meet with GIST specialists from a variety of disciplines.
We will review:
- your medical history
- previous treatment and response to treatment
- tumour histopathology results (where it exists)
- genetic/molecular analyses
- undertake further tests, where appropriate and understand your unique situation
- make recommendations specifically tailored to your individual needs.
Attending the clinic will allow you to meet others living with this rare cancer which in itself is an invaluable experience and collectively you will generate a wealth of information that assist the PAWS-GIST muliti-disciplinary team to discover the underlying mechanisms behind paediatric, adolescent, wild-type and syndromic GIST.
Our goals are:
- to ensure that we recommend the most appropriate treatment plan for each individual patient to progress with their GIST specialist.
- to examine the results that we accumulate from these clinics in order to design an innovative national treatment protocol.
- to stimulate research to try to identify some of the genetic changes that underlie PAWS-GIST.
- to populate the PAWS-GIST database. As part of the National GIST database.
- to collaborate with specialists in Europe, America and elsewhere in the world to find a cure.
We will not be taking over the medical care of the patients that attend our clinics but hope to be in a position to make recommendations, based on information that we gather. In addition, we may be able to offer services or tests and access to specialists that may not be available to you locally.
Our plan is to work in collaboration with the Consortium for Pediatric and Wildtype GIST Research (CPGR) at the NIH Clinic in Washington DC, USA, researchers in Dublin and Europe to advance research that will improve treatment and ultimately find a cure for PAWS-GIST.