Every five years, we launch a survey to find out more about how sarcoma affects people across the UK.  You can help us understand what living with or beyond sarcoma is like across the UK

Sarcoma UK invites you to take part in our 2025 National Sarcoma Survey. The survey will collect information about the experience of people affected by sarcoma across the UK, including adults, children and carers.

What is the survey?

Following the success of our National Sarcoma Survey in 2015 and 2020, Sarcoma UK are running our National Sarcoma Survey for 2025.

The survey will collect information on how people with sarcoma have experienced diagnosis, treatment, post-treatment care and the impact of their wider lives. It will also ask for some information about patients, to help us understand how different groups have different experiences of sarcoma care.

What will use your information for?

The data from the survey will allow us to build a clear picture of patients’ experience of the diagnosis, treatment and impact of sarcoma. It will give us insight into which areas of sarcoma care are working well, and where care is in need of improvement. With this information, we can work towards giving people affected by sarcoma better support in the areas they need it most. In addition, this data will give us strong evidence to present to policy makers and campaign for change.

What will we ask you?

We’re running the survey from 6 January to 31 March 2025. The survey will take no more than twenty minutes to answer, and consists of multiple-choice questions on:

• Diagnosis
• Living with sarcoma
• Treatment
• Charities and support
• About the patient

Who can take part?

• People who have or have had sarcoma
• Family members or carers of someone with sarcoma
• Parents of children under 16 who have or have had sarcoma

Survey details

• Answer only questions you’re comfortable with
• All information is treated anonymously

Need support?

If you have any technical difficulties completing the survey, or any questions about the survey itself, you can call the IQVIA Helpline on 0800 783 1775 or email at: helpline-qh@iqvia.com (Monday to Friday, 9am-5pm).
We understand that sharing personal experiences related to sarcoma can be sensitive and potentially upsetting. If you need support, please consider reaching out to the following organisations.

Sarcoma UK Support Line: 0808 801 0401
Samaritans: Call 116 123, available 24/7.
Mind: Call 0300 123 3393 for mental health support and information.