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How it Works

RareCan is in the process of developing a platform through which people with rarer forms of cancer will be able to share their data with researchers to speed up discovery of new diagnostics and treatments. RareCan will work with partners to produce data needed to drive research. These data will be made available to researchers with members’ consent. At all times, members will remain in control of what data is shared with which researchers.

How it Works

RareCan is in the process of developing a platform through which people with rarer forms of cancer will be able to share their data with researchers to speed up discovery of new diagnostics and treatments. RareCan will work with partners to produce data needed to drive research. These data will be made available to researchers with members’ consent. At all times, members will remain in control of what data is shared with which researchers.

Step 1

Registration & Consent

The first step is to join the RareCan community by creating a RareCan account online. Registration involves providing some basic information about yourself and takes a couple of minutes.

At the moment we are just collecting your contact details so that we can get in touch once we are ready to start collecting more information.

Details about all the data we collect online and what we use it for can be found in our Privacy Policy. Essentially we only use your data to support research into rare cancers, and we only do so with your explicit consent.

Step 2

Clinical Data

Once we have developed the platform further, we will ask for your consent to collect some additional data about you from your hospital and/or GP. We need this to add to the data you provide so that it is useful for research.

Step 3

Tumour & Genetic Data

One of the key things we will be doing in future is collecting data about your tumour and your normal DNA. These data are really important to enable us to support research as researchers often target specific gene mutations or specific chemical signals in tumours.

There is a lot of work going on across the UK public sector to make access to these types of data easier, and we will be working with other national initiatives as part of this process.

Step 4

Data Sharing & Research

RareCan will work in partnership with our public sector data providers to ensure your data is kept secure. We make your data available via our secure online portal to researchers in two ways:

1. Anonymised data about RareCan Members will be accessed by registered researchers to conduct research analyses which doesn’t require any further linking of data; and/or be used to assess the feasibility of future studies.

2. Identifiable data will only ever be shared with registered researchers with your explicit permission. It is shared either for the purpose of conducting research analyses for which further data linkage is required; and/or for the purpose of contacting you to discuss your potential participation in a study.

Examples of the types of research supported by RareCan can be found here.

Step 5

Tracking & Transparency

The data we will make available to researchers is yours. We are custodians of your data, processing it in order to make it useful to researchers so that together we can speed up research and improve outcomes for people with rarer forms of cancer.

We will develop the platform so that you will be able to see and track what we are doing with your data.

Register your interest

Together we can make rare cancers curable