Following on from a piece of work we have undertaken at the last 2 Forums, to try to find what the top ten questions are in prostate research, we are working with the Prostate Cancer Support Federation and the James Lind Alliance to set the priorites for patients and clinicians in prostate cancer, with a view to discovering the top ten treatment uncertainties in prostate cancer.

Prostate cancer is unique amongst the major cancers in a number of ways: it is often slow growing and effectively harmless, yet it kills a third of those diagnosed; there is no recognised test that simply establishes the prognosis for a man who may have the disease; treatment options vary considerably depending on the stage of the disease, but also according to the lifestyle preferences of both the man it affects, and his partner; dietary and environmental factors seem to have a profound effect on both the incidence of the disease and its progression. As a result there is considerable controversy amongst clinicians about optimum treatment, indeed whether to treat at all, and, in particular, the advantages or otherwise of testing to promote early detection. Directed research is needed that is aimed at clarifying these issues so that the unacceptable death rate can be reduced.

‘Treatment uncertainties’ occur when there are questions about treatment that cannot be answered by up to date information based on research evidence. For this exercise we interpret ‘treatment’ in its broadest sense, and we include dietary prevention and diagnostic testing. We want as wide a spectrum of patients and clinicians as possible to tell us what they believe are the uncertainties about prostate cancer. So if you believe that answering particular questions will improve the lot of men with prostate cancer, and you think these questions need to be answered by research, this is your chance to make your views known.

The uncertainties which are submitted to the study will be checked to ensure they are true uncertainties, which have not been answered by existing research elsewhere. They will then be combined with uncertainties which have been identified through a review of existing research and literature. These will then be entered into the Database of Uncertainties of the Effects of Treatments (DUETs). They will then go through a process of prioritisation, in which you can also get involved, to identify ten priorities for research which are of the most importance to both patients and clinicians. This list will be published and provided to organisations that fund research.

If you would like to participate in the programme, you should complete the accompanying short survey (Part I) about you and your organisation (if you represent one, i.e. you are not participating as an individual). You should then use Part II to give details of all the uncertainties that you or your organisation wishes to be entered into the prioritisation process.
If you wish to complete the forms by hand, please print the document below out using the “back to back” printing on your printer, and post it to Emma Halls, Prostate Cancer Research Foundation, 1st Floor, 1-3 Worship Street, London EC2A 2AB Telephone: 020 7330 0991. You may complete the forms electronically, in which case please use the Word document provided. Please do NOT change any styles or otherwise alter the formatting, or delete any of the preamble (which might result in messing up the formatting.) When completed, please email the form to Emma Halls

The closing date for submission of uncertainties is 23rd October 2009.

Download the survey in pdf format

Download the survey in word format

Read the protocol here