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STRONG-AYA

@strong-aya.bsky.social
38 followers 47 following 38 posts

An EU Horizon/Innovate UK funded project creating value-based research ecosystems to develop data-driven, interactive policy & novel insights into AYA healthcare

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STRONG-AYA @strong-aya.bsky.social · 01/10/2026
How can we better understand the experiences of adolescents and young adults (AYAs) with cancer? 📄 This STRONG AYA publication introduces a conceptual model of cancer care and the AYA experience, informed by interviews with AYAs and healthcare professionals. 👉 link.springer.com/article/10.1...
link.springer.com
A conceptual model of cancer care and lived experiences in adolescents and young adults with cancer: results from the multi-national European STRONG AYA project - Supportive Care in Cancer
Purpose Adolescents and young adults (AYAs, 15–39 years) with cancer face unique medical, psychosocial and developmental challenges. Existing conceptual models help explain AYA cancer experiences but ...
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STRONG-AYA @strong-aya.bsky.social · 17/09/2026
New publication: How STRONG AYA transforms registry data to enhance decision-support tools for #AYA oncology Our proof-of-concept clinical tool at @leedsth.nhs.uk lets clinicians view patient-reported outcomes alongside AYA-specific reference ranges. 👉 doi.org/10.1016/j.es... #HorizonEU
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STRONG-AYA @strong-aya.bsky.social · 01/09/2026
📖New paper: Body image issues among adolescent and young adult #AYA #cancer patients and survivors. STRONG AYA members and researchers at @uniluzern.bsky.social reviewed four decades of research to understand how AYAs experience body image during and after cancer. 👉 Article: doi.org/10.1016/j.ej...
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Universität Luzern @uniluzern.bsky.social · 26/08/2026
Körperbild: Wie nehmen Jugendliche und junge Erwachsene ihren eigenen Körper während und nach einer Krebserkrankung wahr? (1/3)
unilu.ch
Vier Jahrzehnte Forschung zu Körperbild und Krebs
Eine Krebserkrankung im Jugend- und jungen Erwachsenenalter kann den Körper verändern und damit häufig auch das eigene Körperbild. Eine Literaturübersicht zeigt einen Bedarf an psychosozialer, individ...
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Universität Luzern @uniluzern.bsky.social · 26/08/2026
A #cancer diagnosis in adolescence or young adulthood can change the body — and often the way people see it. A literature review points to a need for psychosocial support that is flexible and tailored to the individual. @strong-aya.bsky.social @ec.europa.eu @ukri.org
unilu.ch
Four decades of research on body image and cancer
A cancer diagnosis in adolescence or young adulthood can change the body — and often the way people see it. A literature review points to a need for psychosocial support that is flexible and tailored ...
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STRONG-AYA @strong-aya.bsky.social · 15/07/2026
📢 Call for offshoot reviews: We're inviting researchers and clinicians to explore opportunities for conducting offshoot reviews based on this review article on core outcomes for #AYAs with #cancer: www.mdpi.com/2072-6694/17... Interested? 👉Take a look at our website: strongaya.eu/news/offshoo...
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STRONG-AYA @strong-aya.bsky.social · 02/07/2026
📢 STRONG-AYA's next newsletter is out Don't miss our latest updates: mailchi.mp/2603ca58cdbb... Subscribe to receive the next issue directly in your inbox: mailchi.mp/728bae91b0ba... #HorizonEU
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STRONG-AYA @strong-aya.bsky.social · 24/06/2026
The #G7 has put #cancer, and adolescent and young adult #AYA cancers specifically, on its global agenda. For STRONG AYA, the call confirms that our data-driven approach is important for improving outcomes. Read the article here: strongaya.eu/news/g7-lead...
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STRONG-AYA @strong-aya.bsky.social · 03/06/2026
How can research strengthen age-appropriate #cancer care for adolescents and young adults #AYA in Europe? Join STRONG-AYA, PanCare4AYA, and PredictAYA @predict-aya.bsky.social for this online Stakeholder Forum! 📅 30 June 2026, 15:00–17:00 CEST Register here: europeancancer.org/events/436:t...
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STRONG-AYA @strong-aya.bsky.social · 13/05/2026
First look at the AYA Cancer Info Portal prototype v1 - a tool exploring data on adolescents & young adults (AYA) with cancer in Europe. @maastrichtu.bsky.social and @youthcancereurope.bsky.social are working on the next version in co-creation with AYAs. 👉Demo: strongaya.eu/what-is-ecosystem/
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STRONG-AYA @strong-aya.bsky.social · 16/04/2026
STRONG-AYA is a European network to improve healthcare services, research and outcomes for adolescents and young adults #AYA with #cancer. Watch the video below and visit our website to learn more about the project: strongaya.eu/about-us/ vimeo.com/1183402510?f... #HorzionEU
vimeo.com
What is STRONG-AYA
This is "What is STRONG-AYA" by STRONG AYA on Vimeo, the home for high quality videos and the people who love them.
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STRONG-AYA @strong-aya.bsky.social · 08/04/2026
STRONG-AYA members Joshi Hogenboom and Varsha Gouthamchand, @maastrichtu.bsky.social, demonstrated the Flyover #data FAIR-ification tool at the #SWAT4HCLS Conference in Amsterdam. Watch Flyover in action here: strongaya.eu/news/maastri... #FAIRdata #interoperability #healthdata #HorizonEU
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STRONG-AYA @strong-aya.bsky.social · 24/03/2026
Curious about what we’ve been working on? Find out in our third STRONG AYA project newsletter: mailchi.mp/0720eebc51c2... Subscribe to the newsletter to receive the next issue directly in your inbox: mailchi.mp/728bae91b0ba...
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STRONG-AYA @strong-aya.bsky.social · 04/02/2026
February 4 is #WorldCancerDay 💛 #UnitedByUnique reminds us that every young person with cancer has their own story, needs and strengths. This is why age-appropriate, person-centred care for #AYAs is essential. Care that sees them as whole individuals and responds to their unique needs.
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STRONG-AYA @strong-aya.bsky.social · 22/01/2026
📖 New STRONG AYA resource: How do we make AYA cancer data #interoperable across systems and regions? STRONG AYA researchers built a knowledge graph & semantic map making heterogeneous cancer data more #FAIR. 👉 ascopubs.org/doi/full/10.... #HealthData #CancerResearch #SemanticWeb @tngri.bsky.social
ascopubs.org
Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph | JCO Clinical Cancer Informatics
PURPOSERare diseases are difficult to fully capture, and regularly call for large, geographically dispersed initiatives. Such initiatives are often met with data harmonization challenges. These challe...
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STRONG-AYA @strong-aya.bsky.social · 07/01/2026
📢 Our study on the Core Outcome Set (COS) for adolescents and young adults with cancer was published in Lancet Oncology! The COS goes beyond survival and short-term side effects to capture what young people say matters most. Find out what this includes: www.thelancet.com/journals/lan...
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STRONG-AYA @strong-aya.bsky.social · 30/12/2025
🌟 As 2025 comes to a close, we’re reflect on a truly STRONG year with great achievements for STRONG-AYA. We look forward to sharing our progress throughout 2026. We’re grateful to our project partners, collaborators, and supporters, and we wish you all the very best for the new year!
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STRONG-AYA @strong-aya.bsky.social · 17/12/2025
𝐎𝐮𝐫 𝐬𝐞𝐜𝐨𝐧𝐝 𝐩𝐫𝐨𝐣𝐞𝐜𝐭 𝐧𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫 𝐢𝐬 𝐨𝐮𝐭! Read the newsletter here: mailchi.mp/01f9ae6ee826... ✍️ Subscribe to receive the next one directly in your inbox: mailchi.mp/728bae91b0ba... The STRONG AYA consortium wishes you a joyful season and a fantastic start into the new year! 🎄
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STRONG-AYA @strong-aya.bsky.social · 12/12/2025
Pseudonymized data - Personal data or not? A new CJEU ruling clarifies that pseudonymized data isn’t always “personal data” under the GDPR. This has implications for research projects like STRONG-AYA in terms of using and sharing pseudonymized data 👉Read the article: strongaya.eu/news/eu-cour...
strongaya.eu
How can the recent EU Court of Justice ruling regarding the definition of personal data facilitate research involving pseudonymized data? - Strong Aya
Access to health data is essential to all research. This is especially the case in fields where data has historically been limited, such as Adolescent and
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STRONG-AYA @strong-aya.bsky.social · 03/12/2025
Next week, our partner @europeancancer.bsky.social brings together two projects, ALTHEA & DESIPOC, in a joint online stakeholder forum on 'Advancing Mental Health in Cancer Care through Digital Innovation'. 📆 10 Dec, 15:00–17:00 CET 🔗 Register: www.europeancancer.org/events/401:a...
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Len Wee @tngri.bsky.social · 02/12/2025
Warmly inviting article contributions for a special research topic on Federated Learning in healthcare. Pls see call for contributions in link below. @strong-aya.bsky.social www.frontiersin.org/research-top...
frontiersin.org
Frontiers | Enhancing Healthcare through Federated Learning: Privacy, Security, and Performance
Federated learning has emerged as a transformative technique in the fields of AI and healthcare, offering a potential solution to harness data from diverse s...
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STRONG-AYA @strong-aya.bsky.social · 19/11/2025
💡 Interested to learn about #FederatedLearning and the Personal Health Train approach? Leonard Wee (@tngri.bsky.social) from @maastrichtu.bsky.social gave a workshop on this topic at UHN Toronto. ▶️ Watch the recording of the intro session: vimeo.com/1138006113 @uhn.ca @pmresearch-uhn.bsky.social
vimeo.com
Federated Learning Workshop - Part 1 Intro to Federated Learning
General introduction. Part 1 of a workshop hosted by University Health Network / Princess Margaret Hospital from 1-2 October 2025.
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PredictAYA @predict-aya.bsky.social · 13/11/2025
📣 Are you a young #cancersurvivor (diagnosed aged 15-39) or a relative of someone who is? Do you want to help shape the future of care for young survivors? Join our Patient & Relatives Advisory Board! #PatientEngagement #HorizonEU #CancerResearch 👉https://predictaya.eu/call-for-interest-prab/
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STRONG-AYA @strong-aya.bsky.social · 06/11/2025
What does meaningful patient engagement look like? Tomaž Deželak, member of our Patient Advisory Board (PAB) and @youthcancereurope.bsky.social patient advocate, shares his experience with patient co-creation in the project. 👉 Read the article on our website: strongaya.eu/news/patient...
strongaya.eu
Patient co-creation in STRONG-AYA: Perspectives from a patient advocate - Strong Aya
Tomaž Deželak, member of our Patient Advisory Board (PAB) and Youth Cancer Europe patient advocate, works with STRONG-AYA researchers on the development of
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Youth Cancer Europe @youthcancereurope.bsky.social · 13/10/2025
Urška, Nicola, Erik and Tomaž brought YCE to Paris 🇫🇷 for the STRONG AYA General Assembly Meeting, bringing the lived experience perspective to the table and making sure that young people affected by cancer remain at the heart of every discussion and decision from day one.
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STRONG-AYA @strong-aya.bsky.social · 07/10/2025
It’s a wrap! Day 2 of the General Assembly brought inspiring discussions with input from our Patient Advisory Board. Today's highlights: • Cancer awareness campaigns that stick • Update on the federated learning infrastructure and integrated data • Steps for launching our public information portal
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STRONG-AYA @strong-aya.bsky.social · 06/10/2025
📍 We're in Paris for the #STRONGAYA General Assembly meeting, hosted by Institut Gustave Roussy. Today, we discussed: • Sustaining project results & reaching stakeholders • Ethical health data processing for research • Patient consent models • Evaluating & refining our Core Outcome Set
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STRONG-AYA @strong-aya.bsky.social · 03/10/2025
📄 Publication alert: Recommendations and roadmap to implement minimum standards of specialist adolescent and young adult #AYA cancer care units Led and co-authored by AYAs under the EU-CAYAS-NET project and featuring STRONG-AYA among EU initiatives. 👉 www.sciencedirect.com/science/arti...
sciencedirect.com
Minimum standards of specialist adolescent and young adult (AYA) cancer care units: recommendations and implementation roadmap
In 2022, according to the Global Cancer Observatory, >115 000 adolescents and young adults (AYAs; aged 15-39 years) were diagnosed with cancer across …
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STRONG-AYA @strong-aya.bsky.social · 02/10/2025
🎗 October is #BreastCancerAwareness month. Breast cancer is the most common cancer in women. Most cases are diagnosed after 50, but younger women are affected too. Broad screening services for young women are limited, so awareness of self-examination and symptoms is essential for early detection.
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STRONG-AYA @strong-aya.bsky.social · 25/09/2025
📖New STRONG AYA Resource: STRONG AYA consortium members reviewed previous studies to understand the challenges and opportunities adolescents and young adults (AYAs) with cancer face when navigating romantic relationships and sexual intimacy. 👉 Full article: onlinelibrary.wiley.com/doi/10.1002/...
onlinelibrary.wiley.com
Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer ‐ A Literature Review of Qualitative Studies
Objective This review explores the impact of cancer on adolescents' and young adults' (AYAs) romantic and sexual relationships, examining both challenges and opportunities. Methods Qualitative stu...
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STRONG-AYA @strong-aya.bsky.social · 24/09/2025
On #WorldCancerResearchDay, we highlight #FederatedLearning - an approach that learns from data stored in different locations without moving or sharing individual-level (patient) data between these locations. Find out how #STRONGAYA uses it to advance cancer research: strongaya.eu/federated-pa...
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STRONG-AYA @strong-aya.bsky.social · 17/09/2025
📖 New STRONG AYA Resource: The Blueprint for building national and pan-European STRONG AYA ecosystems to improve AYA cancer care is now available on our website. 👉 Read the full blueprint with information on data ecosystem structures, governance, standards & challenges: strongaya.eu/wp-content/u...
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STRONG-AYA @strong-aya.bsky.social · 09/09/2025
📢 Our first newsletter is out! Read to know more about STRONG AYA's latest achievements, developments in our partner countries, publications by consortium members, upcoming events and more: mailchi.mp/69988176a76b... ✍️ Subscribe to receive the next one directly: mailchi.mp/728bae91b0ba...
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STRONG-AYA @strong-aya.bsky.social · 02/09/2025
💛 This #ChildhoodCancerAwarenessMonth, we highlight the need for age-specific cancer care. Children and young people with cancer have unique care needs - yet access to age-specific cancer care is unequal. #STRONGAYA contributes to addressing this gap to improve cancer care and outcomes. #HorizonEU
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STRONG-AYA @strong-aya.bsky.social · 15/08/2025
We reached an important milestone this week: Nodes in all 7 participating centres in 5 countries - UK, Netherlands, France, Poland, and Italy - are now connected to the #STRONGAYA federated infrastructure 🎉 Read more: strongaya.eu/news/two-pro... #HorizonEU #AYAOncology #FederatedLearning
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STRONG-AYA @strong-aya.bsky.social · 14/08/2025
Teams at @maastrichtu.bsky.social and @universityofleeds.bsky.social integrated the largest retrospective dataset in the STRONG-AYA infrastructure so far, with data from >9,000 #AYAcancer patients from the YSRCCYP cancer register. 5/7 centres now have retrospective data in their nodes! #HorizonEU
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European Organisation for Research and Treatment of Cancer @eortc.org · 08/08/2025
🧬 Passionate about patient involvement in cancer research? Join us at EORTC Patient Days, where patients, researchers & advocates connect. 📅 6–7 November, Brussels 👉 Apply by 15 Aug: www.eortc.org/patient-days #EORTCPatientDays #PatientAdvocacy
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STRONG-AYA @strong-aya.bsky.social · 05/08/2025
Key #STRONGAYA resources are now available on our website: ✅ Deliverables like the Federated Infrastructure Blueprint & Material for Education and Clinical Implementation ✅ Pamphlets for patients & healthcare professionals ✅ Scientific publications Visit 👉 strongaya.eu #AYAOncology #HorizonEurope
strongaya.eu
STRONG-AYA | Young cancer | Youth cancer | Cancer | Cancer research
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 individu...
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STRONG-AYA @strong-aya.bsky.social · 31/07/2025
🧠 Rethinking #consent in cross-border #healthresearch isn’t just about checking boxes. Supervised by Marine Jacquemin (@maastrichtu.bsky.social), Flor Pasturino (SSST Ferdinando Rossi) explores a Trust-Based Consent model in her thesis, using #STRONGAYA as a case study. strongaya.eu/news/buildin...
strongaya.eu
Building trust in health data management: Master’s thesis highlights STRONG-AYA’s leading role - Strong Aya
Flor Pasturino, master's student from the Higher School of Studies "Ferdinando Rossi", has recently completed her thesis that shines a spotlight on a critical
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STRONG-AYA @strong-aya.bsky.social · 22/07/2025
🌻 July is #sarcoma awareness month - time to shine light on #rarecancers that often go undetected until progressed. With #STRONG-AYA, we contribute to a better understanding of sarcoma. 💛 Help us spread #awareness - because early detection can save lives.
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STRONG-AYA @strong-aya.bsky.social · 18/07/2025
🚀 STRONG-AYA infrastructure is growing! Two new datasets successfully connected: 1️⃣ CLB dataset: rich clinical data from 3,000+ AYA cancer patients 2️⃣ Sex-Health study data: includes patient-reported outcome measures (PROMs) from 200+ AYAs. Congrats to all involved! 👉 strongaya.eu/news/two-new...
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