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Research into rare cancers

There is a lot of research into rare types of cancer, leukaemia and lymphoma. You can read the following information

 

A quick guide to what’s on this page

Research into rare cancers

All treatments have to be fully researched before they can be adopted as standard treatment for everyone. This is so we can be sure that they work better than the treatments we already use. It also makes sure we know that they are safe.

First of all, treatments are developed and tested in laboratories. Only after we know they are likely to be safe are they tested in people, in clinical trials.

There may be fewer clinical trials for rare cancers than for more common types of cancer. It is hard to organise and run trials for rare cancers. And it can take a long time to recruit the number of patients needed. Getting enough patients is critical to the success of a trial. If the trial is too small, the results won't be powerful enough to prove that one type of treatment is better than another.

The International Rare Cancers Initiative (IRCI) has been set up to develop more research into new treatments for people with rare cancers.

CR PDF Icon View and print the quick guide for the About rare cancers section

 

Why we need research

All treatments must be fully researched before they can be adopted as standard treatment for everyone. This is so that

  • We can be sure they work
  • We can be sure they work better than the treatments available at the moment
  • They are known to be safe

First of all, treatments are developed and tested in laboratories. For ethical and safety reasons, experimental treatments must be tested in the laboratory before they can be tried in patients. If a treatment described here is said to be at the laboratory stage of research, it is not ready for patients and is not available either within or outside the NHS.

 

Clinical trials

Tests in patients are called clinical trials. The trials and research section has information about what trials are.

If you are interested in taking part in a clinical trial, visit our searchable database of clinical trials in the UK and type the name of your cancer into the search box.

If there is a trial you are interested in, print off that page. You can take it to your own specialist. If the trial is suitable for you, your doctor will need to make the referral to the research team. The database also has information about closed trials and trial results.

Here is a video on experiences of taking part in a clinical trial:

View a transcript of the video (Opens in a new window) 

 

Research into rare cancers

There may be fewer clinical trials for rare types of cancer, leukaemia and lymphoma than for more common types of cancer. It is hard to organise and run trials for rare cancers. For example, it can take a long time to recruit the number of patients needed. Getting enough patients is critical to the success of a trial. If the trial is too small, the results won't be powerful enough to prove that one type of treatment is better than another.

The International Rare Cancers Initiative (IRCI) has been set up by the following organisations

  • Cancer Research UK and the National Institute for Health Research Clinical Research Network: Cancer (NIHR CRN Cancer) in the UK
  • The National Cancer Institute (NCI) in the US
  • The European Organisation for Research and Treatment of Cancer (EORTC)

The IRCI aims to develop more research into new treatments for people with rare cancers. They are focusing on certain types of cancer to start with

The IRCI aims to design trials that involve several countries. This means that more people will be available to enter the trials. So we will have better information about which treatments work for rare cancers.  

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Updated: 27 February 2014