A roadmap to help improve access to clinical research for teenagers and young adults (TYAs) with cancer

The ECMC Network have launched a roadmap to improve access to clinical research for TYAs aged 16-24 with cancer. TYAs are less likely to participate in cancer research and we want to change that. Progress in cancer research should benefit everyone. So if you design, deliver, review, approve or fund research, this roadmap is for you. This roadmap shows ways in which research can be farier, more accessible and inclusive of TYA patients. This has been developed by researchers and staff with expertise in TYA care as well as people affected by TYA cancers. 

Research is critical in treating cancer 

Most advances that have been made in treating cancers affecting children and young people (aged 0-24 years) have been made because of clinical trials. 

Researchers need tumours cells and normal tissue to carry out research that aims to better understand cancer. The collection and storing of samples is referred to as biobanking. With a better understanding of cancer, researchers can then develop new tests and treatments that will lead to better outcomes for cancer patients. 

Teenagers and young adults (TYAs) are less likely to participate in cancer research 

TYA patients, aged 15-24, are less likely to participate in clinical trials and there are low levels of samples available for research. There are many complex reasons for this and prevents patients for accessing new innovative treatments, and not as much research is happening in TYA cancers. This is one reason why TYA cancer patients often experiencing lower survival rates compared to children or older adults. 

Research should be inclusive and accessible to all, so everyone can benefit in its progress

We wanted to better understand the challenges TYA patients experience when trying to access cancer research and then come together with the community to come up with ideas and solutions to address them. 

Three primary aims emerged to improve access to early phase clinical trials and biobanking for TYA patients 

1. By making early phase trials visible to staff and to patients and families, there will be more opportunities for TYA patients to take part 

2. By making research more accessible and inclusive, it will make it easier for TYA patients to participate 

3. By collecting and sharing biobanking samples and data, it will improve understanding of cancers affecting TYA patients, leading to more progress and more effective treatments 

There are many ways to make research more accessible and inclusive for TYA patients, here's some examples of how you can get involved

  • Download the roadmap and find ways where you can make a difference
  • Share the roadmap with as many people as you can, it's important to share with your colleagues, networks and organisations to get this in the hands of as many people as possible 
  • Get in touch with ecmcadmin@cancer.org.uk to share your ideas of how we can work together in this space 

Remember everyone has a role to play- whether you design, deliver, review, approve, or fund research. It requires every single one of us working together