Privacy Policy
About our Privacy Notice
Last updated 21st September 2025
We store your data securely and safely and use it in accordance with all relevant data protection laws. Our service was designed using ‘Privacy by Design’ principles and is fully compliant with the UK Data Protection Act 2018 and the UK retained version of the General Data Protection Regulations (GDPR).
Our Privacy Notice tells you, amongst other things, what personal data we collect about you, what we do with it, where we use it and for how long we keep it.
If we make changes to this notice, we will notify you by email. RareCan Limited will be what is known as the ‘Data Controller’ of personal data you provide to us.
Who this Privacy Notice applies to
This notice applies to our members ie people affected by cancer who register their interest in taking part in research projects. A separate notice applies to our business contacts (for example people who access our services).
Our Contact Details
Name: Simon Allocca (our Data Protection Officer)
Address: 8 Park Avenue, Hexham, NE46 3EN
E-mail: dpo@rarecan.com
The types of personal information we collect
We currently collect and process of the following information:
- Name
- Gender
- Ethnicity
- NHS number
- Reason for registering
- Phone number
- Email address
- Postcode
- Cancer type
- Cancer location
- Date of diagnosis
- Contact details of your GP and hospital consultant(s)
- Histology report
- Genetic analysis
- Additional diagnostic information
- Additional clinical information (for example treatment outcome)
How we get the personal information and why we have it
Most of the personal information we process is provided to us directly by you because you have signed up as a RareCan Member. We also receive personal information indirectly, with your consent, from the hospital(s) where you have been diagnosed and treated.
We use the information that you have given us in order to provide you with services depending on your choice of membership:
- Provide information on your general suitability for clinical trials
- Assess your eligibility for the Forte study
- Identify clinical trials that may be suitable for you
- Contact you about specific research projects which may interest you
- Contact you to update you on our progress
- Contact you about RareCan services we think are relevant to you
- Monitor and improve our services
We use a combination of manual and automated processes to help us identify suitable projects which may be of interest to you. Our automated searches are solely based on the information you provide us. If you wish to amend any of the information contact us via DPO@rarecan.com
Who we share your data with
We share identifiable personal data with NHS trusts to make requests for clinical data, including histology reports and details about your cancer diagnosis and treatment. With your explicit consent we may also contact NHS Trusts to convey your interest in taking part in specific clinical trials. Any data we share with researchers will be “pseudonymised” ie presented in such a way that the researcher will not be able to identify you directly, unless you have explicitly consented to us sharing your identifiable data with the research team.
Our lawful basis for processing your data
Under the General Data Protection Regulation (GDPR), the lawful bases we rely on for processing this information is your consent. You are able to remove your consent at any time. You can do this by contacting our data protection officer via mail at 8, Park Avenue, Hexham, NE46 3EN or via email at DPO@rarecan.com. You do not have to provide any reasons for your decision.
How we store your personal information
Your information is securely stored on servers in the EU. Limited information (your name and email address) may also be stored on secure servers in the US. We will keep your personal data indefinitely unless you ask us to delete it from our database. Please contact us at DPO@rarecan.com, 8 Park Avenue, Hexham, NE46 3EN if you wish to make a request to delete your information.
Your data protection rights
Under data protection law, you have rights including:
Your right of access – You have the right to ask us for copies of your personal information.
Your right to rectification – You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
Your right to erasure – You have the right to ask us to erase your personal information in certain circumstances.
Your right to restriction of processing – You have the right to ask us to restrict the processing of your personal information in certain circumstances.
Your right to object to processing – You have the right to object to the processing of your personal information in certain circumstances.
Your right to data portability – You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.
Please contact us at DPO@rarecan.com, 8 Park Avenue, Hexham, NE46 3EN if you wish to make a request.
How to complain
If you have any concerns about our use of your personal information, you can make a complaint to us at:
DPO@rarecan.com,
8 Park Avenue, Hexham, NE46 3EN.
You can also complain to the ICO if you are unhappy with how we have used your data.
The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk