Clinic FAQs (for Patients)

What is PAWS GIST?

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

There are some sub-variants of GIST which are extremely rare and which we have grouped together as "PAWS-GIST".

These are:

• Paediatric/Adolescent
• Wild-Type
• Syndromic (Carney's Triad and Carney-Stratakis Syndrome)

See our Understanding PAWS-GIST page.

Am I eligible?

To be eligible for the PAWS-GIST clinic you will be someone who has been diagnosed with GIST in childhood/adolescence or who has been diagnosed with wild-type or a syndromic form of GIST as an adult.

If you do not know what type of GIST you have please request mutational testing. The NHS has established a national genomic testing network to enhance the existing laboratories who undertake these tests and which underpins the NHS Genomic Medicine Service.

The national genomic testing service is delivered through a network of seven Genomic Laboratory Hubs (GLHs), each responsible for coordinating services for a particular part of the country.

The seven Genomic Laboratory Hubs (GLHs) are as follows:

• Central and South Genomic Laboratory Hub led by Birmingham Women’s and Children NHS Foundation Trust
• East Genomic Laboratory Hub led by Cambridge University Hospitals NHS Foundation Trust
• North West Genomic Laboratory Hub led by Manchester University NHS Foundation Trust
• North Thames Genomic Laboratory Hub led by Great Ormond Street Hospital for Children NHS Foundation Trust
• South East Genomic Laboratory Hub led by Guy’s and St Thomas’ NHS Foundation Trust
• South West Genomic Laboratory Hub led by North Bristol NHS Trust
• North East and Yorkshire Genomic Laboratory Hub led by The Newcastle upon Tyne Hospitals NHS Foundation Trust

How will I benefit by participating?

Your individual case will be examined by the most specialist team of experts in the UK. Having reviewed your individual circumstances you and your local oncologist will receive a report containing recommendations and a treatment plan tailored to your specific needs.

Will the Clinic benefit others?

Collectively each individual patient who attends the clinic will assist in building our specialist team’s knowledge of PAWS-GIST. Through time the data that we collect will be used to undertake research to understand this disease in greater detail and will lead us to answers about what causes PAWS-GIST and eventually what can be done to cure it.

What is the goal of the Clinic?

Our aim is to optimize treatment regimes for PAWS-GIST patients, provide treatment plans tailored to individual circumstances. We aim to be a catalyst for research which will improve treatments and eventually find a cure.

When is the Clinic?

We plan to hold up to 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.

You will be with us for a day and will ideally join us the evening before for a welcome meal. There will be assistance with your travel and accommodation will be booked for you.

Please see the dates for the next clinic.

How do I register?

Please complete the online registration form.

Who will pay for my visit to the Clinic?

• Transportation – Support is available for travel to and from the clinic.
• Lodging & meals – Hotel accommodation for the night prior to the clinic and a Welcome meal involving all of the patients attending the clinic are organised and paid for by the PAWS-GIST Clinic & Research Fund.

Who are the PAWS-GIST Team?

See our Specialist Team page.

Where is the Addenbrooke's Clinic?

See our Clinic Location page.