Although not a research charity, Teenage Cancer Trust has both direct and indirect involvement in research issues concerning cancer and young people.
Professor of Teenage Cancer Medicine
We fund the country’s first Professor of Teenage Cancer Medicine who leads research into why young people get cancer and how best to treat it, ultimately improving diagnosis, treatment and survival rates.
Recent projects and research
- Delays in diagnosing teenagers and young adults with cancer
- Managing symptoms by mobile phone
- Organisers of cancer clinical trials are neglecting teenagers and young adults
In 2008, with the guidance of Professor Tim Eden, an advisory panel was set up for Teenage Cancer Trust. This advisory panel consists of just over 20 specialists in a variety of fields within the cancer field involving teenagers and young adults.
Teenage Cancer Trust's involvement with the National Cancer Research Institute is a further input into research in the field.
Evaluation of the Teenage and Young Adult Cancer Service, Leeds
To help Teenage Cancer Trust evaluate the investments that we make, we are jointly funding an evaluation project with the Knowledge Transfer Partnership.
This is a UK-wide programme helping organisations to improve their productivity through the better use of knowledge, technology and skills that reside within the UK Knowledge Base (http://www.ktponline.org.uk/). Leeds Teaching Hospitals are also involved as a partner in the project as they have provided a teenage and young adult cancer service at St James’s Hospital since 1998, starting with one social worker and a nurse specialist. This project will be reviewing the service across the whole of Yorkshire and Humber, which is led by Leeds Teaching Hospital as the Principle Treatment Centre and today consists of two Teenage Cancer Trust units, a shared care unit, more nurse specialists, two Youth Support Co-ordinators and a psychologist and therefore is a good example of a teenage and young adult cancer service.
In May 2011 Dr Carole Wright (PhD), Coventry University, was employed to carry out this project and interviewed young people, along with their friends and family and a range of staff who work in and around the specialist units. Our aims are to describe and map the model of care that operates in Leeds; highlight those aspects of the service that work well; identify any gaps and pilot appropriate improvements. This will help to strengthen and develop the service, which we can than share with other specialist organisations and teenage and young adult units. Ultimately, we believe the findings will assist in informing future service development as well as shaping government policy. We will keep you up-dated with developments as they arise.
Teenage and young adult cancer research at University of Leeds
Since 1 September 2010, Teenage Cancer Trust has part-funded Dr Dan Stark, Senior Lecturer at the University of Leeds to work on teenage and young adult cancer research.
This funding has been very successful so far, over the past year Dr Stark has shared research findings both locally, nationally and internationally, including the publication of 10 articles about issues for Teenage and Young Adult Cancer.
Dan's work has been used to inform national policy and practice in teenage and young adult cancer care. These activities aim to support improvements in survival rates, increase the understanding of why young people get cancer, improve access to clinical trials and enhance scientific knowledge and care delivered by others.
Dan is also working with Teenage Cancer Trust on developing research and research strategy to assist in a targeted approach to research spending; as well as working collaboratively with the National Cancer Research Institute group for TYA to secure research funding for a range of TYA projects.
In his role as Honorary Consultant in Medical Oncology at St James's University Hospital, our funding helps Dan to be able to continue: - Providing personalised care for young people, ensuring access to clinical trials and the best technical and supportive care - Providing local clinical leadership, to develop the best clinical service for TYA locally, nationally and internationally - Leading in education and training about TYA, including for junior doctors and medical students and developing a professional training structure for the specialism of TYA cancer care
Teenage Cancer Trust funding ensures Dr Stark can continue to promote and develop excellence in TYA cancer care locally, nationally and internationally.
Funded research projects
Teenage Cancer Trust has allocated small grants for research projects that enhance the services and support to teenagers and young adults with cancer and their families.
The most prominent of our research projects has been for the Institute of Child Health and the Advanced Symptom Management System with Young People (YG-ASyMS).
The YG-ASyMS system involves young people reporting their symptoms each day after having chemotherapy by completing a questionnaire on a mobile phone. The symptom reports are sent to a central server and can be viewed on a web page by nurses at the hospital. Reported symptoms can also be viewed on the phone in the form of graphs, which show how symptoms change over time. When symptoms are reported, the young person automatically receives a message giving them advice about what to do. If symptoms are severe or getting worse, a nurse is automatically paged to contact the young person at home to offer advice and support.
We are currently into the third phase where we are moving towards working with much larger numbers of young people across a range of different services throughout the UK.
Utilising a grant from a family who lost a young person to cancer, we have supported an international meeting of doctors and researchers specialising in germ cell tumours. As these are rare cancers, the only opportunity for furthering knowledge and expertise is international collaboration.
Teenage Cancer Trust policy on animal testing in cancer research
Teenage Cancer Trust is primarily a service delivery organization, developing ways of providing the best possible care and professional support for young people with cancer. We allocate a small percentage of our funds to research projects aimed at improving treatment and reducing the side effects of chemotherapy and radiotherapy but do not fund any animal testing.