IKCC Global Patient Survey on Kidney Cancer

The 2026-2027 IKCC Global Patient Survey on Kidney Cancer is a patient-centred survey designed to identify geographic differences in patients’ experiences. It highlights best practices and unmet needs related to patients’ access to care, assesses quality of life, determines the prevalence of shared decision-making, and measures involvement in clinical trials. It is done biennially.

This marks 10 years of collecting data specific to the experiences of people living with kidney cancer, providing a decade of data. It will be possible to track positive and negative trends, demonstrate changes over time, and use patient insights to guide future advocacy, education, and support programs.

The survey will open on 24 September and close on 20 November.

The survey will be available in 18 languages including:

• Arabic
• Chinese (Simplified)
• English (UK)
• English (US)
• French
• French (Canadian)
• German
• Hindi
• Italian
• Japanese
• Korean
• Polish
• Portuguese
• Portuguese (Brazilian)
• Spanish
• Swahili
• Swedish
• Turkish

The survey is open to anyone who has lived experience with kidney cancer, whether they have received the diagnosis or are a carer to someone who has. People who completed previous surveys are invited to participate again.

The GPS takes approximately 15 – 20 minutes to complete. If it can’t all be completed at once, participants can save their responses part-way and return to complete the survey later by simply exiting and returning to the survey page. This happens automatically using browser cookies

After the GPS closes on 20 November, the data will be analysed, and in 2027 the results will be shared in Reports that look at trends, themes, and geographic variations and measure progress on our goal of reducing the burden of kidney cancer. In addition, Country-Specific Reports will be created when more than 100 participants from one country complete the survey.

The information gathered in the GPS helps local patient organisations and IKCC understand the patient experience and how it is changing over time. With the information gathered, organisations can create education, awareness and advocacy programs that respond to the needs of people affected by kidney cancer.

Conducting the survey biennially (every 2 years) helps patient organisations and IKCC understand how the patient experience is changing over time, track trends and demonstrate changes.

Yes! People who completed previous surveys are invited to participate again.

Understanding how experiences of patients in one country compare to global averages can help with planning and prioritising activities to advocate for local improvement.

Additionally, Country-Specific Reports are created when more than 100 participants from one country complete the survey. These results can help support health technology assessment and efforts to improve access to treatment and care. Results from Country-Specific Reports can also be submitted to local publications and conferences in partnership with local health professionals and other experts. This can be done in the form of written submissions, abstracts, posters and more. Results can also inform local awareness and fundraising campaigns.