Anjli, a service pledge patient advocate volunteer , typing on her laptop.

Shaping participant information for a clinical trial about TNBC

Categories: Patient & Carer, TNBC

Review the participant information sheet for a clinical trial about triple negative breast cancer to ensure that the study is accessible and relevant for participants.

What’s the project about?

The National Institute for Health and Care Research (NIHR)’s Patient Engagement in Clinical Development Service enables the life sciences industry to engage with members of the public, so that research can be co-designed with the individuals most likely to be impacted by it.

They’re currently supporting the development of a clinical trial looking into triple negative breast cancer (TNBC). They’re looking for people to review the participant information sheet to ensure that it’s relevant and accessible for participants.

Who can take part?

You can take part if you, or someone you’re related to or care for have had a diagnosis of TNBC which has either spread to the surrounding tissue or lymph nodes (stage 3) or spread to a different part of the body (stage 4)

The researchers would also like you either:

  • To have received at least one systemic therapy (such as chemotherapy, immunotherapy, hormonal treatments or targeted therapies) but the cancer has progressed or returned
  • Or not to have received any systemic therapy since the cancer has spread

If you don’t meet the criteria but are interested in taking part, you’re still invited to express your interest in getting involved.

Why do you want me to be involved?

By taking part, you’ll ensure that vital research is shaped by people who it’s relevant for. You can make sure that the documents are informative, accessible, engaging and fit for purpose, and that the language used is appropriate for potential participants.

What will you ask me to do?

You’ll be asked to review the participant information sheet and supporting documents. You’ll be able to comment upon the design of a research study and feed back on how the information introducing the research is presented to participants.

The review will take around 2 hours to complete and you’ll have 10 days to do the review, although this can be flexible.

The NIHR, on behalf of the life sciences company, will reimburse you £50 for your participation. You can read more about what this could mean for tax, national insurance and benefits on the NIHR website.

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