Stakeholder input wanted for the STRONG-AYA research programme: Gathering the data that matters for evidence-based AYA cancer care and policy across Europe
If you are a stakeholder organisation or representative with an interest in AYA cancer and/or data-driven cancer decision support tools, then we are looking to receive your input during the STRONG-AYA research project.
What is STRONG-AYA?
STRONG-AYA is a Horizon Europe-funded research project led by the Netherlands Cancer Institute (NKI). The project aims at establishing an interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for Adolescents and Young Adults (AYA) with cancer.
To this end, STRONG-AYA is developing a Core Outcome Set for AYA with cancer, which will be then implemented in research and clinical practice, via collection of both prospective and retrospective data, at both national and European levels. The resulting STRONG-AYA data ecosystems will be extended and made sustainable, so that they can help healthcare professionals, patients, caregivers, regulators, policy-makers, researchers and other stakeholders in better understanding AYA cancers and making better decisions about them.
What is the aim of STRONG-AYA stakeholder involvement?
As the 5-year project kicked off in October 2022, a central component of its approach is the ongoing co-design of the STRONG-AYA ecosystem with most relevant stakeholders who will inform, benefit from, and use it in the long-term. In this context, the STRONG-AYA consortium is presently looking to identify all those interested among such stakeholders to take part in shaping the project based on their expertise. This will include providing input on such matters as:
- Key elements to be included in the implementation of STRONG-AYA Core Outcome Set
- Ethical issues to be considered for the development of the STRONG-AYA ecosystems
- Visualisation, analysis and insights made available to future users of STRONG-AYA
- Opportunities to leverage the STRONG-AYA project to better meet the needs of AYA cancer patients and advance AYA cancer care and policies
What to expect?
Following an ongoing mapping and definition of an overarching plan in the first half of 2023, bespoke activities may include for interested stakeholders:
- participation in public sessions for the presentation of the first achievements of the STRONG-AYA project and in multi-stakeholder consultative meetings;
- provision of structured written input via surveys;
- voluntary contribution to supporting the project’s reach towards further relevant organisations and representatives via dissemination of meeting invitations or consultation opportunities
What to do if interested?
All interested stakeholder organisations are kindly invited to register their interest via the bespoke page of the European Cancer Organisation (pressing ‘Contact Us’). Any question may be addressed to: firstname.lastname@example.org.