Gastrointestinal Stromal Tumours (GIST)

Gastroinstestinal Stromal Tumour (GIST)

Supporting people with gastrointestinal stromal tumours and PAWS (paediatric wild-type) GIST to understand and find clinical trials as treatment options beyond standard of care.

There are over 600 live clinical trials for cancer in the UK today. Finding the right clinical trial can be overwhelming. The jargon is heavy, criteria are strict, and doctors rarely have time to explore every option. RareCan provides a dedicated, expert service to cut through the noise.

Our team does the heavy lifting by:

  • Navigating complex trial databases on your behalf.
  • Creating a personalised shortlist of potential treatment trial options.
  • Working alongside your clinical team to support the referral process.

If you would like support with understanding, finding and accessing clinical trials, please choose the level of support that you would like to start with. We look forward to helping you.

Understand your clinical trial options


Talk to one of our experienced Clinical Trial Navigators
£50
  • 30 minute call with an experienced Trial Navigator
  • Review your current situation
  • Explanation of UK cancer trials
  • £50 credit towards Personalised Report or InsightDecode

We are proud to partner with GIST Cancer UK and the PAWS Gist national clinic at Addenbrookes Hospital

GIST Cancer UK has been set up to support people with a GIST cancer diagnosis. Giving them access to information, patient meetings and support groups, as well as creating awareness and raising valuable funds for research.

The PAWS GIST Clinic has been set up to specifically to help those with a Paediatric Adolescent Wild-type & Syndromic GIST diagnosis. Like GIST Cancer UK, they give patients access to information, patient meetings and support groups, as well as creating awareness and raising valuable funds for research.

Summary of GIST

Gastrointestinal stromal tumour (GIST) is a rare type of cancer that develops in the connective tissue of the gastrointestinal (GI) tract, most commonly in the stomach or small intestine. GIST arises from special cells called interstitial cells of Cajal, which act as “pacemakers” for the digestive system. Tumours can vary in size and behaviour; while some grow slowly, others can spread and require treatment such as surgery or targeted therapy. 

GIST is a rare cancer, with about 1,000 new cases diagnosed each year in the UK. It accounts for less than 1% of all gastrointestinal cancers. Its rarity can make diagnosis challenging, and many cases are only identified during investigations for other digestive symptoms.

GIST can occur at any age but is most commonly diagnosed in people over 50. Men and women are affected at roughly equal rates. Symptoms are often nonspecific, including abdominal pain, bloating, or gastrointestinal bleeding, which can delay diagnosis. Paediatric, Adolescent, Wild-type & Syndromic GIST (PAWS-GIST) mostly affects children, teenagers, and young adults. 

How we can help you

Clinical Trials

Helping you understand, find and navigate clinical trials as potential treatment options

Genetic Testing

Genomic testing designed for people living with a cancer diagnosis who want to understand their cancer in more detail to support decision making.

Frequently asked questions

A clinical trial is a type of research study that tests new medicines, treatments, or approaches to care. The goal is to find out if they are safe and effective for people.

Each trial has specific rules called “eligibility criteria.” These might include age, type of condition, stage of illness, or previous treatments.  These criteria can be very detailed, meaning that even if a trial looks suitable for you on the face of it, you may not be able to take part due to some specific inclusion or exclusion criteria.  Clinical trials also sometimes limit access to patients from particular locations and/or are open to a limited number of patients.

Most trials are free to take part in. The study team usually covers the cost of the treatment being tested. Sometimes travel expenses may also be reimbursed.

Publicly available clinical trial data is often complex, unreliable, or out of date. We maintain our own highly curated database of UK treatment trials. Instead of you spending hours deciphering medical jargon, our expert team does the heavy lifting. We review the complex eligibility criteria, create a shortlist of trials tailored to your diagnosis, and support you and your clinical team in making referrals. We also update your report periodically as your situation or the trial landscape changes.

Clinical trials are usually considered when there is no standard treatment available. This can happen when you are first diagnosed (particularly with a later-stage or rare cancer) but is most common after you have already received the standard-of-care treatments for your cancer.

No.  RareCan helps you find information about potentially suitable trials. You should always talk to your clinical team about whether any of the trials identified might be suitable, and your doctor will make a referral if appropriate.  The trial team will then talk you through the trial in detail before you decide whether you would like to join or not.  You will then go through detailed screening to see if you are suitable for the trial.  Whether you join a trial is always your choice.

Not always. Some trials randomly assign participants to receive either the new treatment or the best available standard treatment. This helps researchers make fair comparisons.

Trials follow strict rules to protect participants. Safety is closely monitored, but all treatments can have risks. The research team will explain these clearly before you decide.

No, we cannot guarantee you will be enrolled in a trial. We work alongside you and your clinical team to find the best potential options. However, trials have very strict and complex eligibility criteria. Some of these criteria can only be assessed during medical screening at the trial site itself. Additionally, trials have limited spaces, meaning they may close enrollment even if you are a perfect match.

No. At RareCan we are focused on helping you find treatment options in the UK.  We will be extending the service to residents of other countries soon, and will start offering reports that include international trials in due course, but currently we are focused on providing high quality, personalised information about treatment trials in the UK only.

Not every trial. Our reports focus on treatment trials and aim to highlight the most relevant options for you. There isn’t a single perfect, complete source of trial information, so while we work hard to keep our database up to date, it may not include every possible trial. Our reports are designed to support you and your clinical team in exploring potential next treatment options, but they should not be seen as a complete list.

The Personalised Trial Report searches for trials based on your general clinical history and cancer type. The InsightDecode service goes a step further by using your existing genetic test results (such as a FoundationOne or Guardant360 report). We translate that complex genomic data into plain English and use your specific genetic mutations (biomarkers) to find highly targeted, precision medicine trials that standard searches might miss.

Many modern cancer treatments are “targeted therapies.” This means the drug is designed to attack a specific genetic alteration driving your tumour’s growth. A genetic test maps out the DNA of your cancer. By knowing your exact genetic profile, we may be able to match you to cutting-edge clinical trials testing new drugs against those specific mutations.

No. We can conduct a comprehensive search using your standard clinical history through our Personalised Trial Report. However, having genetic data often opens the door to more specific targeted therapy trials. If you haven’t had a genetic test yet, you can explore our private Insight genomic testing services to get a detailed profile of your tumour.

Yes. If you already have a genetic test report but aren’t sure what it means for your treatment options, our InsightDecode service is designed exactly for this. We will translate the heavy scientific jargon into a clear summary and use the data to search for targeted trials that match your genetic profile.

Supported by

Regulatory complaince

RareCan has over 3,000 members, here’s what some of them say.

The voices and experiences from our RareCan members, shared to help others on their own cancer journey. 

The Journal

Discover the expert perspectives, the clinical insight, the cancer research breakthroughs, and the real experiences from the RareCan community.
Scroll to Top