Data & Research
Rare Cancer Data & Research
Browse below to explore the types of data RareCan uses and the types of research we support with your data
Types of data & analyses we use
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.
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.
One of the key things we will be doing in future is collecting data about your tumour and your normal DNA. These data are really important to enable us to support research as researchers often target specific gene mutations or specific chemical signals in tumours.
There is a lot of work going on across the UK public sector to make access to these types of data easier, and we will be working with other national initiatives as part of this process.
Types of Research We Enable
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 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.
Together we can make rare cancers curable
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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.