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CORDIS - Resultados de investigaciones de la UE
CORDIS

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

CORDIS proporciona enlaces a los documentos públicos y las publicaciones de los proyectos de los programas marco HORIZONTE.

Los enlaces a los documentos y las publicaciones de los proyectos del Séptimo Programa Marco, así como los enlaces a algunos tipos de resultados específicos, como conjuntos de datos y «software», se obtienen dinámicamente de OpenAIRE .

Resultado final

Project communication plan and initial tool set (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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

Material for education and clinical implementation (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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 (se abrirá en una nueva ventana)

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

Leaflets explaining outcomes in lay terms (se abrirá en una nueva ventana)

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.

Publicaciones

Minimum standards of specialist adolescent and young adult (AYA) cancer care units: recommendations and implementation roadmap (se abrirá en una nueva ventana)

Autores: U. Košir, A. Totovina, D. Stark, A. Ferrari, J. de Munter, W.T.A. van der Graaf, E. Manten-Horst, K. Rizvi
Publicado en: ESMO Open, Edición 10, 2025, ISSN 2059-7029
Editor: 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? (se abrirá en una nueva ventana)

Autores: Danielle Shanley; Joshi Hogenboom; Flora Lysen; Leonard Wee; Aiara Lobo Gomes; Andre Dekker; Darian Meacham
Publicado en: EMBO Reports: Science and Society, Edición 25, 2024, ISSN 1469-3178
Editor: 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 (se abrirá en una nueva ventana)

Autores: 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
Publicado en: ESMO Open, Edición 10, 2025, ISSN 2059-7029
Editor: 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 (se abrirá en una nueva ventana)

Autores: Sophie Maria Penfold, James Cunningham, Pauline Whelan, Martin G. McCabe, John Ainsworth
Publicado en: Pathophysiology, Edición 32, 2025, ISSN 1873-149X
Editor: MDPI AG
DOI: 10.3390/PATHOPHYSIOLOGY32030046

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer (se abrirá en una nueva ventana)

Autores: 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
Publicado en: BMC Cancer, 2024, ISSN 1471-2407
Editor: 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 (se abrirá en una nueva ventana)

Autores: 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
Publicado en: Psycho-Oncology, Edición 34, 2025, ISSN 1057-9249
Editor: Wiley
DOI: 10.1002/PON.70285

Actionability of Synthetic Data in a Heterogeneous and Rare Health Care Demographic: Adolescents and Young Adults With Cancer (se abrirá en una nueva ventana)

Autores: Joshi Hogenboom, Aiara Lobo Gomes, Andre Dekker, Winette Van Der Graaf, Olga Husson, Leonard Wee
Publicado en: JCO Clinical Cancer Informatics, 2024, ISSN 2473-4276
Editor: 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 (se abrirá en una nueva ventana)

Autores: 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
Publicado en: Cancers, Edición 17, 2025, ISSN 2072-6694
Editor: MDPI AG
DOI: 10.3390/CANCERS17030454

From Federated Learning to Publicly Facing Platform; Proof-of-Concept of the STRONG AYA Information Portal (se abrirá en una nueva ventana)

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

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