Strong AYA: Implementing a Core Outcome Set in AYAs with Cancer
Research type
Research Study
Full title
Strong AYA: Implementing a Core Outcome Set (COS) for Adolescents and Young Adults (AYA) with Cancer Utilising Federated Learning
IRAS ID
335080
Contact name
Daniel Stark
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
2 years, 6 months, 28 days
Research summary
STRONG-AYA is a new, interdisciplinary, multi-stakeholder European collaboration to improve research, outcomes and healthcare services for Adolescents and Young Adults (AYA) with cancer, defined as individuals aged 15-39 years at cancer diagnosis.
AYAs with cancer are a unique group; they face age-specific issues (e.g. infertility, unemployment, financial problems) and decreased quality of life due to cancer and its treatment. Unlike dedicated healthcare and trials for paediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. AYAs who are at the core of society and economy need access to age-adjusted and high-quality healthcare.
To better identify and respond to the particular needs of AYAs, this project brings together multiple stakeholders across seven countries. The aim is to develop and implement a core (i.e. the most important) set of specific outcomes that we can measure for AYAs with cancer in routine care, and the data infrastructure to analyse these together securely. The project has 5 Work Packages (WPs) of which this application pertains to the first - implementing the Core Outcome Set (COS) in England - Leeds and Manchester.
The COS represents a set of key questions, deemed by patients, healthcare professionals, researchers and policy makers as the most important clinical and patient-reported outcomes related to AYAs' care and lives. It was developed within the STRONG-AYA consortium by the University of Southampton. STRONG-AYA will establish:
(a) What is needed at a system level to successfully implement the COS into clinical practice, beyond this research project;
(b) How we can collect local COS data and integrate our analyses with other UK and international AYA cancer outcomes;
(c) Federated analysis of international datasets to determine who has poorer outcomes, shape care so that it reaches those who need it the most, and streamline and enhance the quality of care offered to AYAs at national and international levels.REC name
West of Scotland REC 5
REC reference
25/WS/0025
Date of REC Opinion
12 Mar 2025
REC opinion
Further Information Favourable Opinion