The European Network for TYA with Cancer (ENTYAC) is going from strength to strength this autumn. We reconvened this European Collaboration in 2019 with specific input from SIOP Europe. Now we are a wide-ranging collaboration between SIOPE, ESMO, ESTRO, EHA, EONS, the national AYA specialist professional groups in UK, France, Netherlands, Germany, Italy, Service users in Youth Cancer Europe and CCI Europe, and are growing engagements with over 30 AYA-focussed Non-Governmental Organisations and charities.
We have published position papers, delivered 2 further surveys of (i) health service development and (ii) charitable endeavours, sought to influence policy in Brussels and held a half-day face-to-face meeting in Milano recently. We are hoping to carry out further meetings and build wider collaborations with North America at the next international AYA congress in California in June of 2023.
ENTYAC was also instrumental in obtaining Horizon Europe funding recently for STRONG- AYA. This Euro10M 5-year programme is a collaboration between 7 specialist European clinical services for AYA with cancer, 4 universities, Youth Cancer Europe and The European Cancer Organisation. It will:
1. Develop a Core Outcome Set (COS) for AYA with cancer. This will be used to measure outcomes from clinical and patient-centred perspectives.
2. Implement the COS in research (retrospectively and prospectively) and in clinical practice (prospective).
3. Build a European healthcare research ecosystem for AYA with cancer, of centres wishing to share research, data and innovations.
4. Influence stakeholders (patients, HCPs, researchers and policy-makers), to support evidence-based, participative healthcare decision-making processes, policy-making and research.
As the programme gets up and running, other centres with capacity to contribute may well be able to link to the work, and widen the network and future research further.
This sits alongside excellent Horizon Europe funding for our AYA service user organisations and partnerships to improve inclusion and diversity, and the strength of our engagement in all clinical and research work.
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