STRONG-AYA

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.

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...

📖 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

📢 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...

🌟 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!

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! 🎄

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

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...

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...

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...

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.

💡 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

📣 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/

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

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...

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

📍 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

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 …

📄 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...

🎗 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.

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...

📖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/...

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...

📢 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...

💛 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

Congrats to the teams in Leeds and Maastricht, especially Joshi Hogenboom, Varsha Gouthamchand, Leonard Wee (@tngri.bsky.social) and Nicola Hughes for your great work.

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

🧬 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

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

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

🧠 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...

🌻 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.

Thanks to our partners at @maastrichtu.bsky.social, @tngri.bsky.social, Centre Léon Bérard, and the Maria Sklodowska-Curie National Research Institute of Oncology for their hard work.

🚀 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...