In March 2022, Andy had the opportunity to present at the GIST Cancer UK annual patient and carer meeting and lead a discussion on ‘Patient Drive Research’.
Rarecan is set up to serve the needs of its members- people who have been affected by rare forms of cancer.
When the team at GIST Cancer UK asked me to attend and present at their annual conference, I was very keen to accept the kind invitation to lead a session on “patient driven research”.
GIST (gastrointestinal stromal tumours) are rare cancers usually affecting the soft tissues of the stomach and intestines. About 900 new cases occur every year. Most have a genetic abnormality which makes them sensitive to a specific type of anticancer drug but about 15% don’t.
Research is urgently needed to understand why some patients become resistant to treatment and to find new ways to treat those who don’t have the common genetic mutation. Rarecan is supporting a research project to help map out the genetic changes in GIST which in turn should stimulate interest in drug companies in finding new approaches.
This was the first “in person” meeting for GIST Cancer UK since the pandemic and everyone was obviously really happy to escape from their “Zoom boxes” into the real world. I don’t think I was the only person who had to search in the back of the wardrobe for a smart pair of trousers.
My presentation about Rarecan and the gene sequencing project led to a lively debate both during a round table discussion and in the lunch queue afterwards! I was interested to find out what reservations, if any, people had about signing up as members on Rarecan and to contributing to the research project.
I also wanted to know what they felt about seeing the results of their genetic tests. As expected there were a range of views but overall people were really enthusiastic about the chance to persuade drug companies to work on new approaches to treating GIST and weren’t concerned that RareCan has been set up as a company rather than a charity.
In general people supported the idea that they should be able to see the results of any genetic analysis on their tumours but did agree that this would have to handled with great care if the results could affect other members of their family.
Feedback like this is of huge importance to the RareCan team and a stimulus for us to move as fast as possible to deliver our mission to improve outcomes for all patients with rare forms of cancer.
You can see Andy’s full presentation here.