ICONIC: Improving Outcomes Through Collaboration in OsteosarComa
The ICONIC study wants to improve how doctors treat osteosarcoma, a type of bone cancer, because there haven't been many new treatments in the last 20 years. Researchers will collect health information from patients of all ages, including details about their cancer, treatments, and how they responded. They will also collect blood and tissue samples. By looking at all this information together, scientists hope to learn more about why osteosarcoma starts and grows, why it spreads, and why some treatments work better for certain people. The study also wants to understand how the cancer and its treatments affect patients' daily lives. Ultimately, the aim is to help people with osteosarcoma live longer and have a better quality of life.
At a glance
What is this study about?
Osteosarcoma is a type of bone cancer that mostly affects young people, but can also occur in older adults. Unfortunately, even with current treatments like chemotherapy and surgery, the survival rate hasn't improved much in the last 20-25 years. This study, called ICONIC, is a big effort to change that. Doctors and scientists believe that by understanding more about exactly how osteosarcoma develops and behaves, they can discover new and more effective ways to treat it.
To achieve this, the study will gather detailed health information from people of all ages who have osteosarcoma. This includes things like how the cancer was diagnosed, its size and location, the treatments received, and how well those treatments worked. Alongside this, blood and tissue samples will be collected for laboratory analysis. By putting together the detailed health records and the lab results, researchers hope to uncover important clues about why some osteosarcomas grow faster, why some spread, and why some patients respond better to treatment than others.
The ICONIC study isn't just about the science; it's also about understanding the real-life impact of osteosarcoma and its treatments on patients. By learning more about patients' experiences, doctors can make sure they are offering the best possible care and support tailored to individual needs. The ultimate goal is to use all this new knowledge to develop new treatments and improve the lives of everyone affected by osteosarcoma.
Key takeaways
- This study aims to discover new ways to treat osteosarcoma.
- It collects health information and samples from patients getting standard care.
- It's for people of all ages with a recent osteosarcoma diagnosis.
- No new treatments or extra hospital visits are involved.
- Your participation helps to improve care for future patients.
- You can stop taking part at any time without affecting your care.
Who may be eligible?
To take part in this study, you would need to have been recently diagnosed with osteosarcoma. This means a diagnosis usually within the last four months. The diagnosis needs to be confirmed by looking at a sample of the cancer tissue under a microscope, or if that's not fully clear, by other signs and scans that strongly suggest osteosarcoma.
It's important that you, or your parent or legal guardian if you are under 16, provide written consent to join the study. This means you understand what's involved and agree to take part. There are no upper or lower age limits for this study; it's open to people of all ages.
The main thing that would prevent you from joining is if your osteosarcoma diagnosis was made more than four months ago. The study wants to gather information from patients who are newly diagnosed to get a complete picture from the start of their journey.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Do you have a new diagnosis of osteosarcoma (usually within the last four months)?
- Has your osteosarcoma diagnosis been confirmed by tissue samples or scans?
- Are you able to provide written consent (or your parent/guardian for younger patients)?
- Are you willing for your health information and samples to be used for research?
What does participation involve?
If you decide to take part in this study, you won't be given any new or different treatments. The study is purely observational, meaning doctors will simply collect information about your existing care and treatment, as well as blood and tissue samples. You'll continue to receive the standard care for osteosarcoma recommended by your doctors.
Taking part involves your doctors sharing information from your medical records, such as details about your diagnosis, the treatments you receive (like chemotherapy or surgery), and how your cancer responds. They will also collect blood samples, which are usually taken during routine blood tests you'll already be having. If you have surgery, a small part of the tissue removed during the operation will be used for research. You won't need extra hospital visits just for the study. Your participation will last for as long as your treatment and follow-up care continues, allowing researchers to track your journey and how your cancer progresses over time.
Potential risks and benefits
Locations (22)
- University College Hospitals London NHS Foundation TrustVerified postcodeLondon, United Kingdom· Recruiting
- NHS Grampian Health BoardVerified postcodeAberdeen, United Kingdom· Recruiting
- Birmingham Women's and Childrens NHS Foundation TrustVerified postcodeBirmingham, United Kingdom· Recruiting
- The Royal Orthopaedic Hospital NHS Foundation TrustVerified postcodeBirmingham, United Kingdom· Recruiting
- University Hospitals Birmingham NHS Foundation TrustVerified postcodeBirmingham, United Kingdom· Recruiting
- Cambridge University Hospitals NHS Foundation TrustVerified postcodeCambridge, United Kingdom· Recruiting
- Cardiff and Vale University LHBVerified postcodeCardiff, United Kingdom· Recruiting
- NHS Lothian Health BoardVerified postcodeEdinburgh, United Kingdom· Recruiting
- NHS Greater Glasgow and Clyde Health BoardVerified postcodeGlasgow, United Kingdom· Recruiting
- Leeds Teaching Hospitals NHS TrustVerified postcodeLeeds, United Kingdom· Recruiting
- University Hospitals of Leicester NHS TrustVerified postcodeLeicester, United Kingdom· Recruiting
- Alder Hey Children's NHS Foundation TrustVerified postcodeLiverpool, United Kingdom· Recruiting
Common questions
What is osteosarcoma?
Osteosarcoma is a type of cancer that starts in the bone. It's the most common kind of bone cancer, but it's still quite rare overall.
Will I get new medicine if I join this study?
No, this study doesn't involve any new medicines or treatments. It's about observing and collecting information on the standard care you're already receiving.
Why hasn't treatment for osteosarcoma improved much?
One reason is that doctors don't fully understand why osteosarcoma starts and grows. Also, it's a rare cancer, so it's been difficult to do large studies on new treatments until now.
What kind of information will you collect about me?
Researchers will collect details about your diagnosis, where the cancer is, the treatments you have, and how your body responds to them. They'll also collect blood and tissue samples.
Can I leave the study at any time?
Yes, you can choose to stop participating in the study at any point, and your medical care will not be affected.
How to find out more
Krystyna Reczko
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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