STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for Adolescents and Young Adults (AYA) with cancer, defined as individuals aged 15-39 years at cancer diagnosis. AYAs with cancer form 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 pediatric 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. AYA-care and research will benefit from collection and pooling of patient-centered data and collaboration among all stakeholders: patients, healthcare professionals, scientists, and policymakers. Our consortium of clinical and scientific leaders in AYA-care, data science and registries, European Cancer Organisation, Youth Cancer Europe and EORTC will build on previous initiatives and EU grants. Within STRONG-AYA we will set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools that bring, in co-creation with all stakeholders including patients, novel insights into AYA healthcare. The project objectives, include: 1) Development of a Core Outcome Set (COS) for AYAs with cancer; 2) Implementation of the COS in 5 national healthcare systems (FR, IT, NL, UK, PL) and establish national infrastructures for outcome data management and clinical decision-making and a pan-European ecosystem that also welcomes future European countries; 3) Disseminate outcomes and facilitate interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes, establish feedback loops for AYA cancer patients and the healthcare systems, and improve the reporting and assessment of outputs towards policy-makers.

Despite an increasing number of innovative therapeutic strategies, the large majority of drug candidates fail in clinical trials. This is particularly important for nanotherapeutics that are used as drug carriers or therapeutic agents to selectively kill cancer cells. This failure is largely due to difficulties to accurately model and predict the distribution of nanoparticles in vivo and their therapeutic efficacy. The IMITATE project will develop an integrated 3D in vitro platform enabling the prediction of patient-cell response to nanotherapeutics, by reproducing the in vivo hypoxic, metabolic and mechanical environment. The platform will couple in silico and in vitro approaches to decipher nanoparticle transport and radiotherapy efficacy in situ, within a reproduced 3D physiological context, including a precise control not only in terms of chemistry and biology, but also in terms of mechanics (stiffness, stress) and transport of molecules (through a porous material away from the flow). The transport of two types of nanoparticles will be studied: (1) AGuIX® nanoparticles, currently under clinical trials. (2) Fluorescent polymeric nanoprobes, with tunable physicochemical properties to unravel the influence of size, charges and functional group on nanoparticles transport and internalization within deep tissue layer. IMITATE will guide future nanotherapeutic generation by deciphering nanoparticles transport within tissue, and how it is related to their effective radiosensitivity. The ground of this project is a newly developed agarose-based microsystem that provides a user-friendly platform for optical imaging High Content Screening. It enables spatio-temporal analyzis of fluorescent nanoparticles transport within 3D model tumors, with relevant statistics. It now calls for new engineering development to mimick key physiological players: the presence of a porous matrix surrounding the tumor, a flow at distance, and a mechanically confined and rigid environment.

The current sequencing technologies used in genetics and the massive data generated in healthcare and research are challenging patients' rights to prior information, consent and non-opposition. Respect for autonomy is an ethical and legal requirement in France, which means that individuals must participate in decisions concerning their health. In the case of genetics, these requirements are heightened because the information provided may be predictive, shared with part of family members, requires specific informed consent prior to the test, implies rigorous (multi)professional support for the interpretation and communication of results, and has its own timeframe. In this context: do the practices of information, consent and non-opposition in genetics meet the customs and expectations of the parties involved, and do they comply with French law? Is consent given as part of a genuine co-decision process? Are practices consistent across all medical specialities and reseearch in France? The aim of our transdisciplinary research is to encourage the emergence of an informed choice from people undergoing genetic analysis. We are using participatory, human and social science and public health approaches to 1/define the concepts of information, consent and non-opposition in genetics, 2/assess practices (geneticists and other prescribers, Personal Protection Committees, experiences of patients/research participants) and 3/improve existing information and decision-making tools and produce new ones if necessary in a co-construction approach, with stakeholders, in order to clarify the information processes required prior to any consent or non-opposition. More generally, our results will help to improve public health policies for the benefit of patients, their families and professionals.