Welcome to the Cancer52 survey

Welcome to  Cancer52’s survey of people with rare and less common cancers about the coronavirus pandemic. This is the second survey we have run since the pandemic began.  The following questions ask you about your experiences during the coronavirus crisis. You can complete this survey yourself or ask someone else to complete it on your behalf. It consists of 30 questions and should take about 30 minutes to complete. Some questions will not apply to you and the survey will automatically skip you past these.

Cancer52 is a charity and an alliance of patient groups and charities that represent those with rare and less common cancers. You can find out more about us at www.cancer52.org.uk.

The first survey ran in summer 2020 and you can find the results here. Over 1000 people responded to the first survey and Cancer52 used the results to inform the Government about what needs to be done to help people with rare and less common cancers during the pandemic. Cancer52 also shared the results on 16 cancers with the relevant member charities, who have also produced their own reports.

Cancer52 will use the results of this second survey to understand how the Covid-19 crisis is continuing to affect people with rare and less common cancers particularly on topics like treatment and support; any issues around shielding, and anxieties, concerns and hopes for the future. We will share a full summary of results with our members and use this information in our discussions with the Government, the NHS and industry to continue to push for the best possible care and treatment for people with rare and less common cancers in all circumstances.

Your answers are anonymous and we will not ask you for your name or contact details, although you can opt to join our mailing list at the end of this survey if you would like to keep in touch with Cancer52 and our work. 

Sharing the data with relevant member charities

If we receive responses from 20 people or more with the same type of cancer, we will share the data we collect in this survey on that type of cancer only with the relevant Cancer52 member charity so that they can understand how the pandemic is affecting the specific groups of people they help. The data we share will be non-identifiable. We are not collecting names or contact details in this survey.  You can view our Cancer52 members here. We will not share the data with any other organisations unless legally required to do so. You can read more about our privacy policy here

You’ve been sent the link to this survey either because you have given us permission to do so in earlier dealings with Cancer52, or because the charity you are linked to is a member of Cancer52. 

If you have any questions about this survey or how it will be used please contact patientvoice@cancer52.org.uk.

Thank you for taking part.


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* 1. Please confirm that you are happy for us to share your anonymised data with Cancer52 member charities in this way and are happy to proceed with the survey.

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