All approved cancer treatments available today have been proven in clinical trials. This section explains how trials are run, how you might take part in a clinical trial and how a trial might help you.

Retention in clinical trials: the kidney cancer patient perspective

Clinical trials are the cornerstone of advancing treatment for kidney cancer, and they provide evidence about which treatments work. It is a core belief of IKCC that every patient deserves access to the highest quality care and the opportunity to participate in research through clinical trials.

Research has shown that compared with all clinical trials, clinical trials in cancer have a lower rate of completion, which could be related to their longer duration, the greater cost to patients, travel requirements, and serious side effects. But ultimately, when a kidney cancer patient has made the careful decision to join a clinical trial, and then later chooses to withdraw from that trial, it is the clinical trial that has somehow failed the patient.

IKCC launched a pilot project – Retention in clinical trials: the kidney cancer patient perspective. The project aims to understand the barriers and other considerations that drive that important decision of leaving a clinical trial and uncover ways to better support patients currently in or considering joining clinical trials. The full report is now available: IKCC 2022 Clinical Trial Retention Paper

Report Highlights include:

  • The qualitative study identified eight domains that are important for clinical trial retention: knowledge, skills, social influences, environmental context and resources, beliefs about capabilities, reinforcements, beliefs about consequences and emotion
  • The role patient organisations can play in supporting patients’ participation and duration in clinical trials by increasing awareness of trials and providing support
  • The importance of including patient values in trial design, including information needs and addressing the burden of participating in trials

The report was developed through the contributions of IKCC Affiliate Organisations Action Kidney Cancer, formerly Kidney Cancer Support Network (UK), Kidney Cancer Canada (CA), and KidneyCAN (US). Josefine Björkqvist and Dr Rachel Giles (on behalf of the IKCC) planned and prepared the report. This project was funded with sponsorship from BMS, Exelixis and Ipsen in full compliance with the IKCC Code of Conduct.

IKCC’s abstract on Retention in clinical trials: the kidney cancer patient perspective has been accepted as a poster at the International Kidney Cancer Symposium (IKCS): Europe (April 2022) and the Patient Poster Session at the 37th Annual EAU Congress (July 2022).

What is a clinical trial?

A clinical trial is an experiment that tests an idea. It could be an idea about how to give a treatment, for example, if a new treatment is safe or how well it works. The treatment being tested can be a drug, a new way of giving radiation or performing an operation, or something as simple as a different way of caring for patients.

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Why can't I just take the new treatment?

We all want the best possible treatment for our family and ourselves. When a “new” medication is mentioned in the newspaper, or on the TV, we take interest, especially if someone we love is currently living with cancer.

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Is a clinical trial right for me?

A clinical trial can be a very good option for treatment if you are suffering cancer. The most obvious reason for considering a clinical trial is obviously to find a treatment that will be best for you. Many patients join a trial hoping that the treatment they can get on a trial is better than the standard that is currently available.

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What are the risks and benefits of taking part in a trial?

When deciding if you want to take part in a trial, it is important to realise that the new treatment might work for you, but it might not.

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How do I find out more about clinical trials?

There is a lot of useful information about clinical trials available online and through kidney cancer patient organisations. Local organisations may best know which trials are open in your region.

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Lay summaries of kidney cancer trials

Taking part in a clinical trial can be a good choice but it is often hard to find a clinical trial that is right for you. Many patient organisations and websites maintain lists of clinical trials. Please visit this section for a list of some of the many clinical trials for kidney cancer patients available worldwide.

Lay summaries of kidney cancer trials

Infographics for study results

Sometimes study results are hard to understand. In this section you can find our patient-friendly infographics for study results.

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Factsheet: Understanding clinical trials

The fact sheets are available to organisations to publish on your own website. They include a ‘Distributed by:’ box on the back that allows each fact sheet to be personalised with your organisation’s logo and stamp.

View/download factsheet

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