Inform, Empower, Connect

In the 1970s the treatment for osteosarcoma (OS) was completely transformed by chemotherapy. Suddenly a cancer that previously had very few options was curable. However, since then there have been few changes to the treatment. Not only can the drugs cause long-term side effects but not everyone responds to them. Medical oncologist Dr Sandra Strauss is determined to change this.

22 years ago, Dr Sandra Strauss began her oncology training on a sarcoma ward. As is the way with medical training, after a year she was moved on to a different speciality. However, her time on the sarcoma ward left an impression on her. Not only did she miss the team and her work with the patients, but she saw the need to advance research in OS.  

‘It’s that connection between the patient and the team and myself and also the interplay between looking after a teenager and their parents and the rest of the family I found really rewarding’ Dr Sandra Strauss, UCL

Dr Strauss is now one of the UK’s leading researchers in OS and is leading the ICONIC trial (Improving Outcomes through Collaboration In OsteosarComa). The study aims to increase our understanding of OS, help inform research, direct clinical trials and ultimately find new treatments.

We were delighted to interview Dr Strauss about the trial.  Watch the video or read the transcript to find out more about Dr Strauss’s work, the importance of the study, how to get involved and the results so far.

The ICONIC Trial

OS is considered to be a complex cancer. Scientists have so far not been able to identify specific genetic changes or predict why certain people respond to treatment. Imagine you are buying a present for a someone. If you don’t know much about them, you can’t ask the shop assistant specific questions to narrow down your search. The same is true for OS, if we don’t understand it how can we focus the research to identify which treatments will give the best outcome?

‘(ICONIC has) brought the whole community across the UK together including clinicians, pathologists, researchers, radiologists and patient groups to really get us to work together to answer lots of questions for patients’ – Dr Sandra Strauss, UCL

The ICONIC trial aims to deepen our understanding of OS, so researchers know what questions to ask and where to focus their research. It is achieving this by collecting data from people with OS. This includes clinical data (diagnosis, treatment, test results) and genetic data from tumour samples and blood tests. This data can be used to answer questions such as why OS progresses and what treatment would be best for certain people.  Information is also being collected about the patient experiences. This includes questionnaires about diagnosis and the treatment journey. The hope is that by identifying challenges patients face at diagnosis, changes can be made to overcome them.

How was ICONIC possible

ICONIC would not be possible without patients kindly agreeing to take part. Sandra Strauss explained that ‘the more patients you have…the more power you have to look at things with a different perspective.’  In other words, each person’s data takes us a step closer to understanding more about OS.

One of the big challenges with recruiting for trials is access. People undergoing cancer treatment may not be able to travel to trial centres, which could prevent them from taking part. Through a collaborative effort, ICONIC has opened up in 25 centres across the UK. This has made it easier for people to take part.  With 170 patients already enrolled the researchers are confident that the data collected will provide key information for future OS research.

Importantly, ICONIC was only made possible because their funder, the Bone Cancer Research Trust (BCRT), believed in it. We spoke to Zoe Davison, Head of Research and Information at the BCRT, about why they decided to fund this trial. ‘‘Working with the NCRI (National Cancer Research Institute) bone sarcoma sub-group, we recognised that there was an urgent need to pull the osteosarcoma community together and fund a project that would improve our understanding of osteosarcoma and accelerate the development of new clinical trials for these patients, which have remained limited for many years…We are extremely proud of the progress being made in this project.’ This highlights how important it is to work together to advance OS research. Working together researchers, patients and charities made ICONIC possible.

we recognised that there was an urgent need to pull the osteosarcoma community together and fund a project that would improve our understanding of osteosarcoma and accelerate the development of new clinical trials for these patients‘ – Zoe Davison, BCRT

Get involved with ICONIC

The ICONIC trial is open to people in the UK who have been diagnosed with OS in the previous 4 months. Most people with newly diagnosed OS will be told about the trial by their OS team. If you are not told about the trial you can ask your doctor, contact the BCRT or reach out to the team at Osteosarcoma Now.

A massive thank you to Dr Strauss for talking to us about her research and we are looking forward to hearing more about ICONIC over the next few years.

Visit our clinical trial toolkit to mid out more about clinical trials or search our clinical trial database.