Putting People at the Centre of Research

A prostate cancer registry is a database of information on individuals who have or had prostate cancer. This information can be about each person’s medical history, any medications and treatments they are having or have had, and changes to their experience over time. By gathering this information together, we can learn much more about how a disease affects people’s lives.

There are all these really important bits of information scattered across different sites in the UK. In fact, there are over 150,000 records relevant to prostate cancer scattered across the health system but this information does not talk to each other, and real peoples’ lived experiences are rarely captured. This fragmented approach is slowing down breakthroughs in developing new treatments for prostate cancer and new tools to help diagnose it earlier.

This registry will bring together and cleverly link all these different bits of information in one central place and with real people at the centre it will transform the way we understand, diagnose, and treat prostate cancer.

Our registry is in the planning stages. We need as many people as possible affected by prostate cancer to pledge their support because the registry is only useful if it is big (many thousands of participants). Your pledge will help us to demonstrate to others that the registry can work and make the case to secure the funding needed to launch our pilot project early next year.

There would be a number of ways you could engage with the registry, from completing occasional surveys (every few months) about your experience to sharing your medical information in a safe, secure, anonymised way. Once we launch the registry we will come back to you with more details on all the different ways you would be able to get involved.

Whatever your experience of prostate cancer – whether you had an early intervention and are now cancer free, or you are on active surveillance or watchful waiting, or you are continuing to undergo treatment – your information will help save lives.

By joining the registry, you would:

• 1. Be able to access more relevant information about your treatment and care.
• 2. Be kept informed about the most relevant clinical trials and be automatically notified if you become eligible for one.
• 3. Provide critical evidence that we need to speed up and shape vital research.

It is of the utmost importance to us that your privacy is protected and your information is kept safe and secure at all times. There are a number of ways that your privacy would be protected:

• 1. Removing details that identify an individual person and taking further steps to anonymise information.
• 2. Using an independent review process to make sure the reason for using any data is appropriate, ethical and in the best interests.
• 3. Having representatives of the patient community participate in the oversight and the governance of the registry.
• 4. Ensuring strict legal contracts are in place before any information is accessed by researchers.
• 5. Implementing robust IT security, such as encoding information and storing it on secure servers.

The registry would hold both personal and medical information. The reason for holding personal and medical information together is that it allows us to create longitudinal linked data, that is linked data gathered over a period of months and years. Creating this type of linked data is extremely important because this allows us to understand the true impact of prostate cancer over the duration of people’s lives.

Your personal information would never be shared with anyone. It would only ever be used to get in touch with you, if you have given us permission to do so, and for the purposes of creating linked data.

No personal identifiable data (i.e. data that would allow someone to recognise you as an individual) would ever be released to any third party. All medical information you provided to the registry (for example, in the form of completed questionnaires or providing your clinical records) would be anonymised before being used for research purposes.

You would also always have the right to ask for all your data to be removed at any time, at which point it would be deleted from the registry.