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Browse below to explore the types of data RareCan uses and the types of research we support with your data


Browse below to explore the types of data RareCan uses and the types of research we support with your data


As RareCan develops we aim to work with our members and partners to produce as rich a data source as possible to have the maximum impact on rare cancer research. Availability of data, types of analysis and requirements of research are all an evolving field, at which RareCan is operating at the cutting edge. Below are broad descriptions that we will update as the platform develops. Details of the data we use and how we use it will always be up to date in our published Privacy Policy, and our members will always remain in control of what we do with their data.

Clinical Data

Clinical data includes basic information such as the age and gender of a person with cancer as well as more details about the way in which they were diagnosed and treated and how they responded to any treatment that they were given. This may be provided directly by a member who signs up to RareCan or indirectly by secure linkage to information held in their NHS records. This linkage will only be done with a member’s explicit consent and will be restricted to information which is relevant to their diagnosis of cancer.

Tumour Data

Data about the tumour includes a description of its appearance under the microscope-obtained from the NHS laboratory where the analysis was undertaken. This provides what is called a histological diagnosis. Examination under the microscope can also provide important information about how likely a tumour is to grow and spread. This is called a tumour grade.

Genetic Data

In many cases there is information available which describes abnormalities in the genetic code held in the DNA contained within the tumour cells. These abnormalities can be extremely important in predicting how a tumour may respond to treatment and may also provide leads for the development of new drugs. Abnormalities in the DNA of tumour cells are often detected by comparing it with DNA from normal cells- often obtained from a blood sample.


Clinical Trials

The only way to ensure that a new approach to treating a rare cancer is effective is to subject it to a clinical trial - otherwise any perceived improvement may have occurred by chance. RareCan will help researchers to find enough participants in order for a clinical trial to produce meaningful results. Most new approaches will involve the use of drugs but in some cases RareCan may be able to help in the development of a new surgical treatment.

By bringing together information from a variety of sources it will be possible to identify patients with particular types of cancer. For example, the collection of specialised laboratory results will indicate which patients are most likely to respond to a new drug targeted at a particular abnormality in the genetic code of a tumour. Without RareCan this can take many months. This acts as a major barrier and deters many researchers from undertaking clinical trials in rare cancers.

Translational Studies

Translational studies bridge the gap between basic research, using cells grown in the laboratory or animals, and clinical trials. Translational research helps to identify new drug targets and ways to diagnose and monitor cancer. For this to be possible, researchers must be able to access tumour samples obtained from patients with cancer- left over after a diagnosis has been made. For rare cancers this is often a challenge as even a large hospital will often have only a few samples for rare cancer types- and for the rarer tumours may have none. RareCan will help researchers to know which hospitals to contact in order to obtain the samples they need.


RareCan will be able to facilitate a wide range of studies in addition to clinical trials and translational research. For example, it will be possible to identify members who are willing to complete questionnaires about their quality of life or their experience of diagnosis and treatment. It will also be possible to use the RareCan database to guide policy makers on the best allocation of NHS resources.

Register your Interest


I have a cancer diagnosis

If you have a cancer diagnosis or you are the parent of a child with a cancer diagnosis, please start here.

I'm a supporter

If you’re a friend or family member of someone with cancer, a nurse, an oncologist, an activist, a fundraiser or you’d simply like to help, please start here.

I'm a researcher

If you are interested in setting up a research project or clinical trial aimed at improving the care people affected by rare cancer receive please start here.