PART TWO

Have you or someone you know been affected by cancer as teenager or young adult? – Have your say in identifying priorities for future research on teenage and young adult cancer.

How can I contribute to shaping the future research agenda?  

The Teenage and Young Adult (TYA) Cancer research agenda is often set by researchers, clinicians and the pharmaceutical industry. We want to give you a louder voice in research. People who have experienced cancer as a teenager or young adult, their families, friends and healthcare professionals working with young people with cancer know the issues that directly affect them most. We want to make sure that research addresses these issues and focuses on the questions that still need to be answered. 

Last year, we asked young people who had been diagnosed with cancer between the ages of 13 and 24, their families, friends, partners, carers and healthcare professionals to tell us what questions about teenage and young adult cancer they would like to see answered by research. Nearly 300 people replied, submitting 855 questions.

These responses have been turned into research questions. We removed any that had already been answered or would be answered by ongoing research and combined any that were the same.

 104 questions remain and we are now asking you to tell us which ones you think are the most important.  

Who can take part?

You can 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 are we asking you to do?

This survey contains a list of 104 questions. Please read each question and decide how important you think it is for that question to be answered. We would like you to rate each question according to how much of a priority you think it is for research to be undertaken to answer it. Your rating will be based on what is important for you. This survey will take around 30 minutes to complete. 

Click here to take part.

Accessibility

If you have problems accessing the survey then please contact us on the email below.

Who is running this survey?

This survey is being overseen by the TYA Cancer Priority Setting Partnership Steering Group led by the James Lind Alliance and supported by Teenage Cancer Trust, CLIC Sargent and Children with Cancer UK. Our contact details are below.

What happens next?

We will look at all of the responses to the survey. The 25-30 most highly prioritised questions will be taken to a final workshop. At this workshop we will bring together young people with cancer, family members and healthcare professionals to decide on the most important questions, to produce a top 10 list of priorities. The top 10 research priorities for teenage and young adult cancer will then be identified. These will be promoted to researchers and research funders, to highlight the questions that future research needs to answer. The questions not included in our top 10 will not be lost, these along with the top 10, will be published on the James Lind Alliance website http://www.jla.nihr.ac.uk/top-10-priorities/.

If you are interested in attending the workshop you can leave your contact details at the end of the survey.

More Information

1. Purpose and Protocol

2. The James Lind Alliance Process

3. Teenage and Young Adult Research Priority Setting Partnership - Who is Involved?

Contact us

You can contact us by email: [email protected]  or telephone: 01483 684132.

Tweet us: @tyapsp 

For further information about the James Lind Alliance please go to: http://www.jla.nihr.ac.uk/.