RareCan Limited: Privacy Notice (members)

Last updated 24th January 2023

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.

Table of Contents

Who this 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: Andrew Hall (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 the following information:

If you become a member

We currently collect and process of the following information:

  • Name
  • Gender
  • Ethnicity
  • NHS number
  • Reason for registering
  • Phone number
  • Email address
  • The first half of your postcode
  • Cancer type
  • Cancer location
  • Cancer source
  • Date of diagnosis
  • Contact details of your GP and hospital consultant
  • Histology report
  • Genetic analysis
  • Additional diagnostic information
  • Additional clinical information (for example treatment outcome)

How we get the personal infromation and why we have it

Most of the personal information we process is provided to us directly by you because you have expressed an interest in taking part in research projects related to your cancer.
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:

  • Identify projects relevant to your cancer
  • Contact you about specific projects which may interest you
  • Contact you to update you on our progress
  • Monitor and improve our services

We use automated processes to help us identify suitable projects which may be of interest to you. These automated searches are solely based on the information you provide us which you can review via your member portal. 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.

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 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