The Bone Cancer Research Trust's largest grant awarded to fuel improvements in outcomes for osteosarcoma patients.
Osteosarcoma is the most common form of primary bone cancer in young people and has been recognised as a priority by the clinical experts for a number of reasons. Firstly, survival rates for patients with osteosarcoma have remained unchanged for a number of decades. Secondly, there are very few clinical trials for patients with osteosarcoma and no large scale trials for over 10 years. Thirdly, patients over the age of 40 years have never been included in any clinical trials, and so, an optimal treatment for these patients has not been determined. Lastly, although there have been many studies, across the world, looking at the genetics of this disease, the promise of personalised medicine, which is changing cancer care in many other cancer types, remains elusive in osteosarcoma.
There is an urgency to understand this disease and identify new targets for treatment that small isolated biological studies cannot meet, nor can future trials be designed that will take a decade to complete. There is a pressing need, if we are to make any real breakthroughs in this disease, for the research and clinical community to come together to conduct large scale collaborative biological studies and to develop new innovative clinical trials that can test new treatments in parallel and in a much more efficient manner.
In response to this urgent need, the Bone Cancer Research Trust awarded what was at the time their largest research grant. ICONIC is the UK's first ever patient registry and clinical study to capture patient samples and complete medical data from osteosarcoma patients of all ages. Studying both of these in combination gives the biggest chance of uncovering novel treatments and understanding which patients will benefit from these. The study was led by Professor Sandra Strauss, who is based at University College London and is one of the UK's leading researchers in the primary bone cancer field. The project is one of the largest collaborations in osteosarcoma research in the UK, bringing clinical and scientific experts together from University College London, The Royal National Orthopaedic Hospital at Stanmore, The Robert Jones and Agnes Hunt Orthopaedic Hospital, The Royal Orthopaedic Hospital in Birmingham, The Freeman Hospital in Newcastle, Newcastle University, The University of Sheffield, Sheffield Teaching Hospitals NHS Foundation Trust, The Nuffield Orthopaedic Hospital in Oxford, The Beatson West of Scotland Cancer Centre, Royal Manchester Children's Hospital, Velindre Hospital in Cardiff and Northern Ireland Cancer Centre.
The purpose of this project was to deliver a step-change in the way we investigate better treatments for osteosarcoma by aiming to recruit every new patient diagnosed with the disease in the UK. The project brought together scientists, pathologists, and surgeons who worked together in a co-ordinated way to:
- discover and validate circulating and tumour biomarkers that better tell us which patients are likely to benefit from specific treatment and those at higher risk
- correlate tumour molecular characteristics with clinical outcomes to identify patients at higher risk and help identify new treatment targets
- describe variation in treatment that patients receive across the UK and use this information to develop new protocols or better management strategies
- understand the patient-reported experience of osteosarcoma more fully
- use the knowledge gained to develop new clinical trials
ICONIC aimed to provide the platform on which to develop biological studies and sophisticated clinical trials with the overall aim of getting positive research findings and translating these into improved treatments for patients.
Results and next steps
ICONIC ran from November 2019 to January 2025 and demonstrated that such an infrastructure for osteosarcoma research could be established, with 27 centres involved and 337 patients recruited to the study.
The study is followed by Ad-ICONIC.
Initial results have been published and can be found here.
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