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.

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GIST Cancer UK has championed the set-up of PAWS-GIST and is an Alliance partner. As a result we are gradually facilitating introductions of PAWS-GIST patients to others who are experiencing the same.

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We plan to hold three clinics each year at Addenbrooke's Hospital Cambridge, using each one to bring together up to 12 patients who will meet with GIST specialists from a variety of disciplines.

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At the moment most patients are prescribed drugs that are widely used in the treatment of the more common form of GIST i.e. Glivec, Sunitinib and Regorafinib. These drugs have various degrees of success for Wild-type GIST patients. More recently however, drugs are being trialed that specifically target unique characteristics of Wild-type GIST.

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PAWS-GIST awarded the National Cancer Research Institute's Collaboration excellence award 2019!

This award recognises our unique European multidisciplinary team of patients, doctors, specialists and researchers who are collaborating to improve treatments and working to find a cure for PAWS-GIST cancer.

Welcome to the PAWS-GIST Clinic Website!

PAWS-GIST is a UK based alliance of medical specialists, GIST Cancer UK and Patients. We have created a specialist clinic for Wild-type & Paediatric GIST patients.

If you are a younger and/or Wild-type GIST patient then our clinic is tailor made for you!

We are a centre of expertise working to understand the causes and mechanisms of Gastrointestinal Stromal Tumour in children, young people and all with wild-type GIST. Our work is aiming to improve treatment, provide highly specialised care plans and find a cure for this rare form of cancer.

PAWS-GIST and the clinic has been set up to serve patients with a very rare subset of a form of cancer called Gastrointestinal Stromal Tumour (GIST). PAWS-GIST patients represent c.15% of the total GIST patient population and biologically are those patients without a mutation in the cKIT or PDGFRA genes. Patients without these mutations are said to be Wild Type GIST, and their tumours behave differently to GISTs with mutations. Most younger patients diagnosed with GIST are found to carry wild-type GIST while older GIST patients who do not respond to therapies such as Imatinib can also carry wild-type GIST.

Inspired by the Paediatric and Wild-type GIST clinic at the National Institute of Health in America, the PAWS-GIST clinic has been open since 2014 and is the only clinic of its type outside of America.

A GIST cancer diagnosis is a devastating experience no matter what age you are. Our team will provide guidance and specialised care plans designed to optimise management of your GIST and make life as normal as possible for you. In the longer term we believe that seeing more wild-type and paediatric GIST patients will help us to improve our understanding of this disease and identify specific and effective treatments.

What is GIST?

Gastrointestinal Stromal Tumours (GIST) are very rare cancers effecting about 15 people in every million. They are most common in people aged over 50. GISTs belong to a group of cancers called sarcomas, cancers that develop in the soft tissues of the body. GISTS can occur anywhere along the digestive tract but are most common in the stomach or small bowel. GIST tumours are normally driven by abnormalities in genes referred to as KIT or PGDRFA and over recent years new drugs have been developed that specifically target and inhibit these abnormalities leading to dramatically improved outlook for GIST patients.

Gastrointestinal Stromal Tumours (GISTs) are the most common soft connective tissue (mesenchymal) tumours of the gastrointestinal tract accounting for 0.1-0.3% of all gastrointestinal cancers. The reported incidence is around 12-15 new cases per million population which equates to 600-900 potential new cases per annum in the UK.

GISTS are clinically and biologically unlike other tumours and generally occur in patients who are in their 60's or 70's. GISTs most commonly arise from the stomach, closely followed by the small bowel. They are uncommon in the large bowel and rectum and rare in the oesophagus. The most common sites of spread (metastases) are to the liver and peritoneum/omentum and less commonly spread to bones and lungs. Spread to brain and other sites are extremely rare.

A diagnosis of GIST is made by a specialist histopathologist who has experience in these tumours using histological, immunohistochemical and molecular features to make the diagnosis. GISTs have a spindle cell or epithelioid morphology and express kit receptor in 95% of cases, detected by CD 117 antibody. DOG-1 antigen (Discovered on GISTs-1) is a specific and sensitive immunohistochemical marker for GISTS and should be included in the tests diagnosing GISTS. A typical GIST is positive for CD 117 (kit) and DOG-1 and negative for desmin.


What is PAWS-GIST (Paediatric, Adolescent, Wild-type & Syndromic GIST)?

Around 85% of GISTS have mutations in either KIT or PDGFRA (platelet derived growth factor) genes. The other 15% are designated as "Wild type" and have no mutations in either KIT or PDGFRA genes. 'Wild' in this context means that the genes are as to be found in the 'wild' or in the general population (i.e. no known mutations).

GISTs are uncommon under the age of 40 years. Paediatric and adolescent GISTs have a distinctive biology and clinical presentation, they are more common in girls and mainly occur in the stomach. GIST in younger patients are often "WILD type" i.e. they do not have activating mutations in the KIT or PDGFRA genes. The other subgroup of GISTs which have unique biological and clinical features are those GISTS associated with certain syndromes such as Carney's triad, Carney-Stratakis syndrome, Neurofibromatosis-1 syndrome. So wild-type GIST is a description given to GIST patients where the mutation or abnormality is not yet known.


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