The RareCan BioResource
Donating samples of your tumour or blood, or data derived from them, can help researchers to find new ways to prevent, diagnose and treat rare forms of cancer. Our Bioresource is set up to help make this happen.
Joining RareCan gives you the option to donate your tissue samples, blood or data to our NHS ethics approved BioResource. Signing up does not commit you to donating tissue and you can withdraw at any time.
Approved by London – Fulham Research Ethics Committee, REC reference 21/LO/0469.
Supported by
Our Partners
Regulatory Compliance
How it works
How does donating tissue, blood samples or data to the RareCan BioResource work?
1. Become a RareCan Member
Join
The first step is to become a RareCan member. We currently offer the option to donate to our bioresource to people who are customers of one of our other services. In particular, Insight Genomic Test customers can, if they choose to, donate data from their test to the BioResource. If you would like to explore donating in any other circumstance, get in touch with us to discuss.
2. Read the Donor Information
Read
It is really important to read the donor information to make sure you understand and are happy with the details of how the BioResource works. Please contact us if you have any questions.
3. Consent to tissue, blood or data donation
Consent
Your tissue, blood or data will only be collected and used with your explicit consent. The consent form contains a set of things you must agree to in order to donate your sample or data, plus a number of preferences about how it us used.
4. Project-related collection
Projects
If you have consented to sample or data collection as part of one of our Insight Genomic Tests, we will automatically store the sample or data in the BioResource. Under other circumstances RareCan will not immediately set about collecting your sample or data from where it is stored in the NHS archive. We will only start this process when we have a specific project that your sample can be helpful for. We will let you know when this process starts.
BioResource FAQs
What is the BioResource?
When you have an operation to remove a tumour there may be some tissue that is not needed for diagnosis. This tissue is potentially useful to researchers. With your agreement we will arrange for excess tissue to be collected, either immediately after your surgery, or from where it has been stored in the hospital. The tissue will then either be sent directly to researchers for immediate use, or be transported to our BioResource at Newcastle University, where it will be stored securely for use in future research projects.
What is the BioResource used for?
Research teams can apply to our Independent Access Committee to use your tissue for research projects. When you complete the consent form you will be able to express your preferences for how your sample can be used, and you are free to withdraw from the BioResource at any time.
What is the purpose of the BioResource?
By creating our BioResource, we are aiming to:
- maximise the opportunities for your tissue to be used in research.
- make it easier for researchers to get access to the tissue they need for research projects.
- accelerate research into rare cancers.
How is the BioResource funded?
To ensure the BioResource is a long-term, sustainable resource we have set RareCan up as a business that will charge research teams to use the BioResource. Revenue will be reinvested in RareCan, but may also be used to pay dividends to investors and incentivise staff.
Link
Related Blog Post
Would you like to read our BioResource blog post?
The BioResource is a facility at Newcastle University that stores the tissue samples of rare cancer patients…
What is the BioResource?
RareCan has over 3,000 members, here’s what some of them say.
The voices and experiences from our RareCan members, shared to help others on their own cancer journey.
“I joined RareCan to support research into my extremely rare and highly aggressive subtype of uterine cancer.”
— Lindy
RareCan Member
“I joined RareCan to get action and support and research on rare cancers”
— Steve
RareCan Member
“I joined RareCan because they have the solution to the challenges faced within rare cancer research.”
— Dave
RareCan Member
“I joined RareCan as it may help other people in the future.”
— Wayne
RareCan Member
“If my husband was alive today, he would encourage people to take part in research as you never know if you will ever need it in the future.”