THE STRONG-AYA INITIATIVE: IMPROVING THE FUTURE OF YOUNG ADULTS WITH CANCER

Informations projet

STRONG-AYA

N° de convention de subvention: 101057482

DOI

10.3030/101057482

Date de signature de la CE 20 Mai 2022

Date de début 1 Octobre 2022

Date de fin 30 Septembre 2027

Financé au titre de

• Health

Coût total

€ 7 292 902,50

Contribution de l’UE

€ 7 235 023,00

Coordonné par

STICHTING HET NEDERLANDS KANKER INSTITUUT-ANTONI VAN LEEUWENHOEK ZIEKENHUIS
Netherlands

CORDIS fournit des liens vers les livrables publics et les publications des projets HORIZON.

Les liens vers les livrables et les publications des projets du 7e PC, ainsi que les liens vers certains types de résultats spécifiques tels que les jeux de données et les logiciels, sont récupérés dynamiquement sur OpenAIRE .

Livrables

Documents, reports (10)

Project communication plan and initial tool set

Project communication plan (M8): Plan for communicating the project progress and its results. It will comprise dissemination objectives, target audience, tools and planned activities.

Report on the initial core outcome set

Report on the initial core outcome set (M12): Report on the initial core outcome set including results of consensus panel and learnings from the data collection pilot exercise.

Study 2 initiation package

Study 2 initiation package (before enrolment of the first study participant) including:-Registration number of the clinical study in a registry meeting WHO Registry criteria -Final version of study protocol as approved by the regulator(s) / ethics committee(s)-Regulatory and ethics (if applicable, institutional) approvals required for the enrolment of the first study participant

Operational plans for the Pan-European umbrella ecosystem

Operational plans for the Pan-European umbrella ecosystem (M12): Operational plan containing description of main actions required for the deployment and functioning of the Pan European ecosystem.

Repository of use cases of the ecosystems

Repository of use cases of the ecosystems (M12): Repository of use cases use cases developed in collaboration with WP3 that will serve to provide examples of use of the ecosystems.

Scientific publication plan

Scientific publication plan (M12): Plan development to support and promote scientific publications and participation in conferences.

Material for education and clinical implementation

Material for education and clinical implementation (M18): This will include educational material and recommendations for patient recruitment and physician engagement.

Midterm recruitment report study 1

This report is due when 50% of the study population is recruited for study 1. The report shall include an overview of the number of recruited participants by clinical sites, any problems in recruitment and, if applicable, a detailed description of implemented and planned measures to compensate for any incurred delays.

STRONG-AYA Ethics report, with interim reports following Ethics workshops

STRONG-AYA Ethics report, with interim reports following Ethics workshops (M12)

Leaflets explaining outcomes in lay terms

Leaflets explaining outcomes in lay terms (M12): Training material for PAB members to enable their informed participation in decisions on indicator selection and interpreting outcome findings.

Websites, patent fillings, videos etc. (1)

Project website

Publications

Peer reviewed articles (8)

Minimum standards of specialist adolescent and young adult (AYA) cancer care units: recommendations and implementation roadmap

Auteurs: U. Košir, A. Totovina, D. Stark, A. Ferrari, J. de Munter, W.T.A. van der Graaf, E. Manten-Horst, K. Rizvi
Publié dans: ESMO Open, Numéro 10, 2025, ISSN 2059-7029
Éditeur: Elsevier BV
DOI: 10.1016/J.ESMOOP.2025.105829

Getting real about synthetic data ethics: Are AI ethics principles a good starting point for synthetic data ethics?

Auteurs: Danielle Shanley; Joshi Hogenboom; Flora Lysen; Leonard Wee; Aiara Lobo Gomes; Andre Dekker; Darian Meacham
Publié dans: EMBO Reports: Science and Society, Numéro 25, 2024, ISSN 1469-3178
Éditeur: EMBO Press
DOI: 10.1038/s44319-024-00101-0

Adolescent and young adult (AYA) patient involvement and engagement in European health care and research projects: expanding the scope of patient advocacy

Auteurs: U. Košir, F. Lysen, N. Unterecker, T. Deželak, E. Sturesson, I. Shakhnenko, D. Stark, K. Rizvi, A.-S. Darlington, L. Wee, W.T.A. van der Graaf, O. Husson
Publié dans: ESMO Open, Numéro 10, 2025, ISSN 2059-7029
Éditeur: Elsevier BV
DOI: 10.1016/J.ESMOOP.2025.104478

Decreased Heart Rate Variability Is Associated with Increased Fatigue Across Different Medical Populations: A Systematic Review

Auteurs: Sophie Maria Penfold, James Cunningham, Pauline Whelan, Martin G. McCabe, John Ainsworth
Publié dans: Pathophysiology, Numéro 32, 2025, ISSN 1873-149X
Éditeur: MDPI AG
DOI: 10.3390/PATHOPHYSIOLOGY32030046

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer

Auteurs: Olga Husson, Silvie H. M. Janssen, Bryce B. Reeve, Samantha C. Sodergren, Christabel K. Cheung, Martin G. McCabe, John M. Salsman, Winette T. A. van der Graaf & Anne-Sophie Darlington
Publié dans: BMC Cancer, 2024, ISSN 1471-2407
Éditeur: BioMed Central
DOI: 10.1186/s12885-023-11716-2

Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer ‐ A Literature Review of Qualitative Studies

Auteurs: Nicole Collaço, Céline Bolliger, Charlotte Cairns, Samantha Sodergren, Olga Husson, Winette T. A. van der Graaf, Maria Rothmund‐Grenier, Milou J. P. Reuvers, Gudrun E. Rohde, Anna L. Hurley‐Wallace, Konstantinos Angoumis, Emily I. Holthuis, Lina H. Lankhorst, Catarina S. Padilla, Simone Hanebaum, Connor J. Tyler, Katherine J. Hunt, Kirsty Way, Richard Wagland, Thomas J. Cartledge, Thom Legendal, Silvie H. M. Janssen, Anne‐Sophie Darlington
Publié dans: Psycho-Oncology, Numéro 34, 2025, ISSN 1057-9249
Éditeur: Wiley
DOI: 10.1002/PON.70285

Actionability of Synthetic Data in a Heterogeneous and Rare Health Care Demographic: Adolescents and Young Adults With Cancer

Auteurs: Joshi Hogenboom, Aiara Lobo Gomes, Andre Dekker, Winette Van Der Graaf, Olga Husson, Leonard Wee
Publié dans: JCO Clinical Cancer Informatics, 2024, ISSN 2473-4276
Éditeur: American Society of Clinical Oncology (ASCO)
DOI: 10.1200/CCI.24.00056

Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project

Auteurs: Silvie H. M. Janssen, Winette T. A. van der Graaf, Anna Hurley-Wallace, Carla Vlooswijk, Catarina S. Padilla, Charlotte Cairns, Connor J. Tyler, Emily I. Holthuis, Gudrun E. Rohde, Katherine J. Hunt, Kirsty Way, Konstantinos Angoumis, Lina H. Lankhorst, Maarten F. M. Engel, Maria-Sophie Rothmund, Milou J. P. Reuvers, Nicole Collaço, Richard Wagland, Samantha C. Sodergren, Simone Hanebaum, Thom Legendal, Thomas J. Cartledge, Tom I. Bootsma, Yushi Bai, Anne-Sophie Darlington, Olga Husson
Publié dans: Cancers, Numéro 17, 2025, ISSN 2072-6694
Éditeur: MDPI AG
DOI: 10.3390/CANCERS17030454

Book chapters (1)

From Federated Learning to Publicly Facing Platform; Proof-of-Concept of the STRONG AYA Information Portal

Auteurs: Joshi Hogenboom, Aiara Lobo Gomes, Andre Dekker, Winette van der Graaf, Olga Husson, Leonard Wee
Publié dans: Studies in Health Technology and Informatics, Intelligent Health Systems – From Technology to Data and Knowledge, 2025
Éditeur: IOS Press
DOI: 10.3233/SHTI250407