Frequently Asked Questions
We believe that people with rare cancer have the right to live better, longer lives. We make this happen by bringing people together to create opportunities to accelerate research.
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WHAT IS A RARE CANCER?
People often talk about cancer as if it is a single disease but in fact there are many types. It can occur at any age, even before birth, and affect just about any part of the body. Looking under the microscope doctors can distinguish more that 200 different forms of cancer but some of these are much more common than others. ‘Common’ and ‘rare’ are obviously relative terms but most specialists define a rare cancer as one which occurs in less than 60 people per 100,000 each year ie about 4,000 people each year in the UK alone.
WHY IS IT DIFFERENT FROM 'THE BIG FOUR'?
Because they affect most people, most cancer research is done on the four most common types of cancer: breast, prostate, colon and lung. Although much needs to be done to improve the way that these cancers are diagnosed and treated, far less is known about the rare forms of cancer which means that it is often difficult for doctors to give the best advice and prescribe the best forms of treatment to people affected by them.
HOW DO I KNOW IF MY CANCER IS CLASSED AS RARE?
Cancer Research UK have an excellent website which has an alphabetical list of cancer types linked to further information about their frequency https://www.cancerresearchuk.org/about-cancer/type
WHY IS IT SO DIFFICULT TO DO RESEARCH ON A RARE CANCER?
For research to be reliable it needs to be undertaken on enough people to be sure that observations aren’t occurring purely by chance. Finding enough people willing to take part in research with a certain type of cancer is relatively easy for the common cancers but for rare cancer it can be very difficult as they may live anywhere in the United Kingdom
WHAT WILL YOU DO WITH ALL OF THIS INFORMATION?
The information we obtain is put into our secure database. Before we pass anything on to our clients we remove anything which they could use to link it directly to you- for example your name, e-mail address or postcode.
HOW WILL I KNOW WHAT YOU ARE DOING WITH MY INFORMATION?
Once you have registered as a member of RareCan you will be given a password to access all the information that we hold about you so that you can check that it is accurate. We will also keep you fully informed about any research projects which might be of interest to you.
HOW CAN I TRUST THAT MY INFROMATION WILL BE SAFE?
We operate to the highest standards of security and data protection. We comply with all the relevant legislation- most notably the Data Protection Act and GDPR. Our data is securely stored in cloud-based servers in the European Union and personal data is not transferred out of the EU.
WHEN WILL SOMEONE CALL ME FOR A TRIAL?
Unfortunately it isn’t possible to say when, or even if, we will be able to contact you about a possible research project or clinical trial as this will depend on a suitable client coming forward with a proposal.
WHAT HAPPENS IF I DON'T EVER GET CONTACTED?
Although we hope that this isn’t the case it is possible that we will never contact you with a relevant study or trial. However, we will keep in touch and becoming a RareCan member will give you the opportunity to join a community of people who want to see improvements in the way rare cancers are diagnosed and treated and who can raise the profile of these neglected diseases.
WHY IS IT IMPORTANT TO CAPTURE DATA AND TISSUE SAMPLES?
In order to find better ways of diagnosing and treating rare cancer research scientists need to be able to study samples taken from real-life tumours. Studies on animals or cells grown in the laboratory can provide important clues but cannot substitute for the real thing. However, samples by themselves are only of limited value unless they are accompanied by additional information such as when and where the cancer arose and if the person affected by the tumour has received any treatment. The more we know about a cancer the better we can match it with the particular requirements that our clients may have and the greater the chance will be that their research to lead to useful discoveries.
WHAT WILL YOU DO WITH THE TISSUE SAMPLES?
We do not keep any tissue samples ourselves. These will remain in the hospital where they were taken unless and until there is a research project based on their analysis. If you give us your permission to go ahead we will contact the hospital department where the sample is held and ask for it to be transferred either directly to our client or to a processing laboratory. Any sample left over after the research has been undertaken will be returned to the hospital for safe-keeping.