title: National Cancer Research Institute Teenage and Young Adult Clinical Studies Group: The United Kingdom Approach to Research. International Perspectives on AYAO, Part 4.
abstract: The unique psychosocial needs of teenagers and young adults (TYAs) with cancer have been recognized for some time in the United Kingdom. The non-profit Teenage Cancer Trust pioneered dedicated units for TYAs in 1990, and by 2005, the United Kingdom National Institute for Health and Clinical Excellence (NICE) issued healthcare policy advocating age-appropriate care. The National Cancer Research Institute Teenage and Young Adult Clinical Studies Group (NCRI TYA CSG) was also established in 2005. This national research group promotes and generates research specifically for TYAs with cancer, broadly those aged 13-24 years at diagnosis. The work of the TYA CSG to date has focused on six themes: (1) benchmarking clinical trial availability and access for TYAs; (2) developing links with other NCRI tumor-specific Clinical Studies Groups; (3) identifying priority areas for health services research; (4) evaluating the requirement for a cancer registry function for TYAs; (5) identifying issues for late effects and survivorship; and (6) identifying host- and tumor-specific biological differences in TYA cancer. Here we describe some of the research developments of the NCRI TYA CSG in the context of cancer research in the United Kingdom and healthcare policy for TYAs.
authors.affiliation: Department of Oncology, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
authors.forename: Lorna
authors.initials: L
authors.lastname: Fern
authors.affiliation: Department of Oncology, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
authors.forename: Jeremy
authors.initials: J
authors.lastname: Whelan
keywords: cancer diagnosis; clinical trials; research; specialist services