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Sharing Clinical Research Findings with Men

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User
Posted 13 Apr 2026 at 17:04

Hi Everyone,

My name is Samantha Hodder and I’m a Senior Research Impact Officer at Prostate Cancer UK. If you’ve taken part in clinical research focused on prostate cancer, we’d really like to hear about your experience.

 

Why?

As a funder of prostate cancer research, our aim is to ensure that all of our funded clinical studies provide acknowledgement and information to the men who generously volunteer their time and effort.

However, we’re aware that research participants sometimes report that they weren’t told about the outcome of studies they volunteered for. 

We want to learn from your experience to make sure the research we fund provides men with the best possible experience.

 

How do I get involved?

We’ve created a short 10 - 15 minute survey, which you can complete with this link: Staying Connected with Men

 

If you have any queries for us about the survey – please do send us an email on [email protected].

Thank you in advance for sharing your insights. Your input is invaluable and will help to guide how the findings from the clinical research we fund are shared with men who participated.

 

User
Posted 13 Apr 2026 at 17:47
My husband was fortunate to have been on the stampede trial arm j ,he received exceptional treatment and care ,which is still ongoing even though the trial finished quite a few years back . He’s filled in the survey and hopefully it will help other men with this cruel disease.

Best wishes

Debby

User
Posted 03 May 2026 at 20:39

I wasn't treated on a trial, but I read the papers of many. Actually, I was treated according to one of the PIVOTALboost trial arms, but not on the trial (as my oncologist thought it important I went for one specific arm and not the randomisation).

One of my pet peeves is research papers hidden behind paywalls. There was a point where I was receiving more research survey requests for the support groups I run than it was reasonable to send out. One way I filtered them was to say I only send such requests out for research which is to be open research publications, so the patients contributing (and the future patients who will be the primary beneficiaries) will be able to read the resulting papers. That did in one case cause the trial to decide to do open research publications.

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User
Posted 13 Apr 2026 at 17:47
My husband was fortunate to have been on the stampede trial arm j ,he received exceptional treatment and care ,which is still ongoing even though the trial finished quite a few years back . He’s filled in the survey and hopefully it will help other men with this cruel disease.

Best wishes

Debby

User
Posted 14 Apr 2026 at 09:29

This is so good to hear, Debby. Thanks to your husband for completing the survey and thank you so much for sharing this positive experience! It all really does make such a difference and I'm always in awe of the effort people go to in this forum to support others. 

All the best, 

Payge

User
Posted 01 May 2026 at 15:51

Hi everyone, 

Thank you to everyone who has shared their experiences in this research already - it really helps our Research Impact team to ensure that clinical studies we fund provide acknowledgement and information to the men who generously volunteer their time and effort.

If you haven't already shared your insight and would like to, the survey will close at the end of next week on Sunday 10th May. 

If you have any queries for us about the survey – please do send us an email on [email protected].

Your input is invaluable and will help to guide how the findings from the clinical research we fund are shared with men who participated. 

Thank you! Have a great weekend 😊

Payge

User
Posted 03 May 2026 at 20:39

I wasn't treated on a trial, but I read the papers of many. Actually, I was treated according to one of the PIVOTALboost trial arms, but not on the trial (as my oncologist thought it important I went for one specific arm and not the randomisation).

One of my pet peeves is research papers hidden behind paywalls. There was a point where I was receiving more research survey requests for the support groups I run than it was reasonable to send out. One way I filtered them was to say I only send such requests out for research which is to be open research publications, so the patients contributing (and the future patients who will be the primary beneficiaries) will be able to read the resulting papers. That did in one case cause the trial to decide to do open research publications.

 
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