Survey into research priorities for cancers in teenagers and young adults

10 November 2016
Amy and her family receive the news that she has cancer

Patients, families, friends, carers and professionals are invited to take part and submit questions that they think are important about Teenage and Young Adult cancers.

The survey is now closed. 

Visit www.tyac.org.uk for further information about the project

New survey to identify key research priorities for cancer in teenagers and young adults

Have you or someone you know been affected by cancer as teenager or young adult?

Do you work with teenagers and young adults who have cancer?

If so, you are invited to take part in a short online survey.

Why do we need your help?

The direction of research about Teenage and Young Adult (TYA) cancer is often set by researchers and the pharmaceutical industry.

We want to enable patients, their friends, family members and professionals who work with TYAs with cancer to help guide future research by identifying research questions that are important to them.

The questions will help research funders to ensure that we are aware of what matters most to patients, their friends and families, and professionals. This survey is to ask you about what questions you think researchers should be working on.

National survey

To encourage research that is focused on what matters to people affected by TYA cancer and the professionals who work with them, Children with Cancer UK, Teenage Cancer Trust and CLIC Sargent have funded a Priority Setting Partnership.

Patients, families, friends, carers and professionals are invited to take part and submit questions that they think are important about TYA cancer but that have not yet been answered by research. Submitted questions will be ranked by patients, families and professionals in a prioritisation process. The end result will be a ‘top ten’ list of research priorities and unanswered questions that will steer areas for future high quality research about TYA cancer.

The survey will be open until the 31st December 2016.

We would like to invite you to complete the survey if you:

  • have been diagnosed or treated for cancer when you were between the ages of 13 and 24 years old (it does not matter what age you are now)
  • are a relative/friend/partner/carer of someone who has been diagnosed or treated for cancer between the ages of 13 and 24 years old
  • are a professional working with teenagers/young adults with cancer

What will we do with your questions?

All the questions will be gathered, grouped by topic and checked against published research to see if they have already been answered.

The questions that have not already been answered will be ranked to find out which are the most important. This process will involve those directly affected by TYA cancer, their families, friends, and professionals.

The result will be a 'Top 10' list of research questions. These questions will be published and shared with researchers and other research funders to encourage research to find the answers to these questions.

This survey is being overseen by the TYA Cancer Priority Setting Partnership Steering Group led by the James Lind Alliance, which has an established, successful process for delivering priority setting partnerships and ensures transparency, accountability, and fairness.

The Partnership is funded by Children with Cancer UK, Teenage Cancer Trust, and CLIC Sargent.

Visit the James Lind Alliance for more on them and the research Priority Setting Partnerships

Read more: Teenage and Young Adult cancers 

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