Pilot Study/Clinical Trial – your input please

As many of you know I volunteer my time for a number of health/cancer related organisations and projects. One of these relates to clinical trials, pilots and medical research.

Today I was invited to attend a meeting relating to pilot research project for a gynaecological cancer. For confidentiality reasons I can’t go into too much detail about the pilot so forgive the slightly ambiguous detail.

Previous papers and an outline of the project had been sent to me by email for review and comment prior to the meeting. However today’s meeting was with one a lead clinician and a surgeon to understand in more depth the pilot, the background and also their previous findings.

My input, together with a couple of other volunteers, will then be to review the documentation further, advise on the patient information aspect of the documentation and also to voice any concerns that we may have about the pilot, improvements or other care considerations that we believe necessary to include, as if we are patients ourselves. Once this round of paperwork is complete the project will then be presented for grant funding.

If funding is found, this pilot will, if successful, lead to a full European clinical trial, which again, will require further funding to be obtained.

The process is lengthy and time consuming and is driven by otherwise already busy clinicians. However to see their passion at getting this pilot off the ground and hearing about the study itself and the ‘prospective’ benefits to future patients diagnosed with this cancer is incredible, inspiring and has to be admired.

The study aims to show that by having these additional and specific scans, they are able to identify potential spread, metastases or recurrence of this cancer at a much earlier and specific stage, as well as determine if there are specific nodes that need removal (ie without the need to remove unnecessary nodes, as is sometimes undertaken now). The team are aiming to show that with this ‘small’ additional intervention, that advanced cancer can be avoided or reduced and mortality rates decreased substantially.

I was fascinated seeing the early details for presentation and further understanding the additional risks (very low) to a participant taking part. Gosh if they’re right and can prove it in the full blown trial, it will make huge headway in the reduction of advanced cancer and death for this particular type of cancer but also prospectively for other cancer types that behave in a similar way.

Why am I telling you this little bit? Well I figured that many of the readers of this blog do so because they themselves have or know someone diagnosed with cancer or another long term condition.

I’m after your opinions/comments please.

What would be the important things you’d like to know in the patient information presented to you, to encourage you to participate in a study or clinical trial?

As a study participant in this pilot, you would be asked to receive further scans (with tracer dye) and an additional couple of hours added to your ‘regular’ hospital checkup programme.

Who would you like to speak to about the trial, should it be offered to you?

How much information would you like to receive? And in what format?

Is it important to you to know the outcome of the study/trial (if possible)?

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