STRONG AYA research project for adolescents and young adults with cancer launches
Funded by UKRI and EU HORIZON support, STRONG AYA joins fourteen European centres for care, research and advocacy to improve research and healthcare for adolescents and young adults (AYA) with cancer. The collaboration brings together medical oncologists, epidemiologists, healthcare researchers, data scientists, legal and policy experts, and patients to establish a core outcome set, to implement these outcomes across five European healthcare systems and to develop new models to support AYA care and treatment.
Adolescents and young adults (aged 18-39) living with cancer are a unique demographic that currently does not have dedicated age-specific care in cancer, in contrast to paediatric care. However this life phase is characterized by unique experiences and considerations such as fertility, romantic relationships, gender identity and sexuality development, financial independence, parenting young children, education and career establishment, all of which present distinct challenges for people with a cancer diagnosis. This €10 million project fundamentally seeks to establish a patient-centered European network of knowledge sharing to improve and establish dedicated age-specific treatment for AYAs living with cancer at an international level.
- The STRONG AYA consortium is made up of :
- Netherlands Cancer Institute, the Netherlands
- Maastricht University, the Netherlands
- Netherlands Comprehensive Cancer Organisation (IKNL), the Netherlands
- FFUND BV, the Netherlands
- European Organisation for Research and Treatment of Cancer (EORTC) (Belgium)
- European Cancer Organisation (E.C.O.), Belgium
- Youth Cancer Europe, Romania
- University of Southampton, United Kingdom
- University of Leeds and Leeds Teaching Hospital, United Kingdom
- University of Manchester and Christie NHS Foundation Trust, United Kingdom
- Fondazione IRCCS Instituto Nazionale dei Tumori, , Italy
- Centre de Lutte Contre le Cancer Leon Berard, France
- Institut Gustave Roussy, France
- Narodowy Instytut Onkologii im. Marii Sklodowskiej-Curie, Poland
STRONG AYA officially kicked off with a meeting of consortium members in Amsterdam on 12 October.
The Manchester team is led by Dr Martin McCabe from the Division of Cancer Sciences at The University of Manchester, in collaboration with Professor Janelle Yorke, Professor John Ainsworth and Dr Sacha Howell. The Manchester team bring to the programme considerable expertise in clinical management and research in young people with sarcomas, brain tumours and breast cancer, as well as the development and clinical implementation of patient reported outcome and experience measures (PROM/PREM) and the use of eHealth technologies. Funding of just over £750,000 awarded to Manchester will be invested in two PhD studentships, the development of a core outcome set for AYA cancer patients with particular emphasis on incorporating measures relevant to young people with brain tumours, and integration of the core outcome dataset into the English cancer registry to ensure sustainability beyond the initial 5-year programme of work.