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.
Ash: I was offered a place on a trial by my cancer nurse.
Jean: There was a new trial with new drugs and they were confident it would work and they offered it to me and I’m so glad I took it.
Nilesh: What we did, my wife and I, was to do some research on the internet. We came across the source trial which is what I went on and we took that to the doctor and then requested that we be put on to that.
Amy: The only thing that did sort of trouble us as a family when they did tell us was that it was possibly quite painful and there may be some side effects that they didn’t know about.
Ash: I was quite concerned about taking part in a trial because you hear the word trial and you think its test.
Nilesh: You know you hear about trials, clinical trials, drug trials things like that. My reservations were what the side effects were going to be.
Ash: I decided it was the right thing for me because it would potentially offer patients in the future less side effect risk.
Jean: There were lots of questions I had to ask and they were all answered and I was confident in going through the trial and the after care.
Nilesh: Right from day one they’ve been monitoring me. You know I have regular check ups and all that.
Amy: Any symptoms that arose with Poppy, somebody was always there to make sure that she wasn’t in any pain or any suffering.
Ash: I didn’t feel that they were hiding anything from me which when you’re talking about a clinical trial is so important.
Jean: It’s a really warm feeling knowing that what you did has helped other people.
Nilesh: I just hope that I played a part in a new drug that’s out there.
Ash: For other patients and also for society in general.
Nilesh: You’ve got to feel comfortable about the trial itself before you sign up for it. So do your background knowledge and just be 100% that that’s where you want to go.
Ash: Think about it very carefully. Read all of the background literature and ask lots and lots of questions because there’s no harm in doing that.