Welcome

Background

Despite the substantial disease burden for patients and healthcare providers, bladder cancer only receives 0.6% of cancer research spending in the UK, with minimal input of patient advocates. There is an unmet need to identify research priorities based on patients’ and healthcare professional needs.

We have identified about 40 unanswered research questions for bladder cancer. With your help, we would like to identify which ones need to be answered in the next five years!

A first round of the questionnaire has already been completed and we are very grateful for your help.

Here is an update!

Many thanks to those of you that participated in the first round of our questionnaire. We are nearly there, but need a bit more help.

Following our first round, the following five questions were ranked most highly as research priorities by both patients and health care professionals:

1.     Could the identification of the important molecules and genes present in high-risk bladder cancer help to ensure that patients are offered the right treatment to ensure the best possible cancer outcome/prognosis.

2.     Can new genetic markers help us identify which patients require which treatment (risk stratification) and how they will respond to treatment?

3.     Which markers (found in blood, tissue or other fluids - which are related to the cancer) are useful to select more effective treatments in patients with high-risk bladder cancer?

4.     How should patients with high-risk cancer be monitored after their cancer treatment to ensure that any return of the cancer is found?

5.     Could the identification of certain markers (found in the blood, urine or tissue which are related to the cancer) improve outcomes in advanced bladder cancer, especially in patients who require chemotherapy or radiotherapy prior to surgery for their bladder cancer?

What do we need you to do now?

This questionnaire method of coming to a consensus or agreement amongst patients and clinical experts (called the Delphi method) means that we need the questionnaire to be completed preferably by each individual TWICE. 

We have clarified and modified the research questions after gaining more feedback from yourselves, this feedback should now help us to prioritise your research choices better.

 
What if I didn’t complete the first questionnaire?

If you did not get the opportunity to complete the first round questionnaire, please feel free to do so now - the more responses we get, the more accurate this consensus method will be.

There is a box to tick on the questionnaire that indicates if it is your first of second time. 

Thank you for your support!

Dr Mieke Van Hemelrijck – King’s College London
Mr Rik Bryan – University of Birmingham
Dr Steven MacLennan – University of Aberdeen

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