STRONG-AYA
@strong-aya.bsky.social
An EU Horizon/Innovate UK funded project creating value-based research ecosystems to develop data-driven, interactive policy & novel insights into AYA healthcare
📢 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...
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...
January 7, 2026 at 1:07 PM
📢 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...
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...
🌟 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!
We’re grateful to our project partners, collaborators, and supporters, and we wish you all the very best for the new year!
December 30, 2025 at 9:27 AM
🌟 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!
We’re grateful to our project partners, collaborators, and supporters, and we wish you all the very best for the new year!
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! 🎄
Read the newsletter here: mailchi.mp/01f9ae6ee826...
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The STRONG AYA consortium wishes you a joyful season and a fantastic start into the new year! 🎄
December 17, 2025 at 10:12 AM
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! 🎄
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! 🎄
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...
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...
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
strongaya.eu
December 12, 2025 at 9:22 AM
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...
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...
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...
📆 10 Dec, 15:00–17:00 CET
🔗 Register: www.europeancancer.org/events/401:a...
December 3, 2025 at 3:37 PM
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...
📆 10 Dec, 15:00–17:00 CET
🔗 Register: www.europeancancer.org/events/401:a...
Reposted by STRONG-AYA
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...
www.frontiersin.org/research-top...
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...
www.frontiersin.org
December 2, 2025 at 10:12 AM
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...
www.frontiersin.org/research-top...
💡 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
▶️ Watch the recording of the intro session: vimeo.com/1138006113
@uhn.ca @pmresearch-uhn.bsky.social
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.
vimeo.com
November 19, 2025 at 7:04 AM
💡 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
▶️ Watch the recording of the intro session: vimeo.com/1138006113
@uhn.ca @pmresearch-uhn.bsky.social
Reposted by STRONG-AYA
📣 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/
👉https://predictaya.eu/call-for-interest-prab/
November 13, 2025 at 3:22 PM
📣 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/
👉https://predictaya.eu/call-for-interest-prab/
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...
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...
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
strongaya.eu
November 6, 2025 at 11:16 AM
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...
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...
Reposted by STRONG-AYA
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.
October 13, 2025 at 10:19 AM
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.
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
Today's highlights:
• Cancer awareness campaigns that stick
• Update on the federated learning infrastructure and integrated data
• Steps for launching our public information portal
October 7, 2025 at 11:24 AM
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
Today's highlights:
• Cancer awareness campaigns that stick
• Update on the federated learning infrastructure and integrated data
• Steps for launching our public information portal
📍 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
Today, we discussed:
• Sustaining project results & reaching stakeholders
• Ethical health data processing for research
• Patient consent models
• Evaluating & refining our Core Outcome Set
October 6, 2025 at 3:01 PM
📍 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
Today, we discussed:
• Sustaining project results & reaching stakeholders
• Ethical health data processing for research
• Patient consent models
• Evaluating & refining our Core Outcome Set
📄 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...
Led and co-authored by AYAs under the EU-CAYAS-NET project and featuring STRONG-AYA among EU initiatives.
👉 www.sciencedirect.com/science/arti...
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 …
www.sciencedirect.com
October 3, 2025 at 2:25 PM
📄 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...
Led and co-authored by AYAs under the EU-CAYAS-NET project and featuring STRONG-AYA among EU initiatives.
👉 www.sciencedirect.com/science/arti...
🎗 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.
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.
October 2, 2025 at 1:44 PM
🎗 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.
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.
📖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/...
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/...
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...
onlinelibrary.wiley.com
September 25, 2025 at 1:16 PM
📖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/...
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/...
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...
September 24, 2025 at 9:05 AM
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...
📖 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...
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...
September 17, 2025 at 8:57 AM
📖 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...
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...
📢 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...
✍️ Subscribe to receive the next one directly: mailchi.mp/728bae91b0ba...
September 9, 2025 at 12:37 PM
📢 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...
✍️ Subscribe to receive the next one directly: mailchi.mp/728bae91b0ba...
💛 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
September 2, 2025 at 12:30 PM
💛 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
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
#HorizonEU #AYAOncology #FederatedLearning
August 15, 2025 at 7:59 AM
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
#HorizonEU #AYAOncology #FederatedLearning
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
#HorizonEU
August 14, 2025 at 1:36 PM
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
#HorizonEU
Reposted by STRONG-AYA
🧬 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
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
August 8, 2025 at 11:46 AM
🧬 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
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
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
✅ Deliverables like the Federated Infrastructure Blueprint & Material for Education and Clinical Implementation
✅ Pamphlets for patients & healthcare professionals
✅ Scientific publications
Visit 👉 strongaya.eu
#AYAOncology #HorizonEurope
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...
strongaya.eu
August 5, 2025 at 9:59 AM
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
✅ Deliverables like the Federated Infrastructure Blueprint & Material for Education and Clinical Implementation
✅ Pamphlets for patients & healthcare professionals
✅ Scientific publications
Visit 👉 strongaya.eu
#AYAOncology #HorizonEurope
🧠 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/news/buildin...
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
strongaya.eu
July 31, 2025 at 9:49 AM
🧠 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/news/buildin...
🌻 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.
With #STRONG-AYA, we contribute to a better understanding of sarcoma.
💛 Help us spread #awareness - because early detection can save lives.
July 22, 2025 at 9:46 AM
🌻 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.
With #STRONG-AYA, we contribute to a better understanding of sarcoma.
💛 Help us spread #awareness - because early detection can save lives.