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Research into rare cancers

Find out how research into rare cancers is organised across the world.

All cancer treatments have to be fully researched before they can be used for everyone. This is so we can be sure that:

  • they work
  • they work better than, or as well as, the treatments already available
  • they are known to be safe

First of all, treatments are developed and tested in laboratories. This research is at a very early stage and the treatment is not ready for patients.

When a treatment shows promise in the laboratory, it might progress into clinical trials. This is when the treatment is tested in in people.


There might be fewer clinical trials for rare types of cancer 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. The results won't be powerful enough if the trial involves too few people. For example, results won't be able to prove whether one types of treatment is better than another.

The International Rare Cancers Initiative (IRCI)

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

  • anal cancer that has come back or spread
  • fibrolamellar hepatocellular cancer - a type of primary liver cancer
  • melanoma of the eye
  • penile cancer
  • salivary gland cancer
  • small bowel adenocarcinoma
  • sarcoma of the female sex organs, such as sarcoma of the womb
  • thymoma (cancer of the thymus gland)
  • rare brain tumours

The IRCI design trials that involve several countries, including the UK. This means that more people will be available to enter the trials. 

Research into genomics

We have a complete set of genes in almost every healthy cell in our body. This is called a genome. The genome is made of DNA (genetic code) and is the body’s instruction manual. It tells the body how to make, run and repair itself.

The study of the genome is becoming an important part of cancer research. This is because cancer is linked to changes in the genome.

The 100,000 Genome project is being run by the Department of Health and is in the early stages. At the moment it is focusing on some rare diseases and some types of cancer. As well as common cancers, this includes rare cancers, such as sarcoma and brain tumours.

The researchers aim to study 50,000 genomes from 25,000 people with cancer. They will also collect information about their diagnosis and treatment.

Studying the genome might help researchers understand more about a cancer. For example, what causes a cancer to develop and how a cancer responds to treatment. This might help doctors in the future to improve the diagnosis and treatment of a cancer.

Rare Cancers Europe

Rare Cancers Europe is a partnership between a variety of different research organisations, professional societies, charities and rare cancer networks. This initiative was set up to raise the awareness of rare cancers and their work includes:

  • improving the quality of clinical trials into rare cancers
  • increasing the number of trial available
  • the development of more successful treatments for rare cancers 

Finding a trial

Finding a trial that is suitable for you might be more difficult if you have a rare cancer. It's possible that there may not be a trial you can take part in. 

Ask your cancer specialist or specialist nurse about trials. They might be part of a research group if they have particular expertise in your type of cancer.  

Cancer Research UK has a searchable database of clinical trials in the UK. Choose from the list of cancer types, or type the name of your cancer into the search box.

The database also has information about closed trials and trial results.

Last reviewed: 
14 Jun 2017
  • Clinical trial designs for rare diseases: Studies developed and discussed by the International Rare Cancers Initiative
    J. Bogaerts (and others)
    European Journal of Cancer (2015) 51, 271– 281

  • Genomincs England website 
    Accessed June, 2017

  • International Rare Cancers Initiative (IRCI) website
    Accessed June, 2017

  • Rare cancers: Challenges & issues
    RK. Pillai and K. Jayasree
    Indian Journal of Medical Research 2017 Jan;145(1):17-27

  • Rare Cancers Europe
    Accessed June, 2017

  • Rare Cancers Europe: joining forces to tackle a common problem
    R. Schaefer
    Rare Tumors. 2012 Apr 12; 4(2): e24

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