Publications

ESMO real world data and digital oncology

From registration to insight: how STRONG AYA transforms registry data to enhance decision-support tools for adolescent and young adult oncology.

01-12-2026

Journal of clinical oncology : official journal of the American Society of Clinical Oncology

RINGSIDE Phase II Study of Varegacestat for Treatment of Desmoid Tumors: A Randomized Dose-Finding Clinical Trial.

08-10-2026

Lancet (London, England)

Distinguishing AYA oncology from early-onset cancer.

03-10-2026

The Lancet. Oncology

Reporting health-related quality of life in randomised clinical trials evaluating adjuvant systemic therapy: recommendations of Common-Sense Oncology and the European Organisation for Research and Treatment of Cancer.

29-09-2026

European radiology

ESR Bridges: new developments in imaging and treatment of soft tissue sarcoma-a multidisciplinary view.

28-09-2026

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

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.

25-09-2026

ESMO open

Access to cancer clinical trials in Europe: when trial availability does not match patient need.

21-09-2026

ESMO open

Advancing cancer care for adolescents and young adults: the role of the European Network of Expertise.

18-09-2026

Annals of surgical oncology

ASO Author Reflections: Beyond Time to Diagnosis: The Lasting Impact of Diagnostic Experience in GIST.

01-08-2026

Neuro-oncology practice

Symptom burden in young adult brain tumor survivors: Key intervention targets based on patient-reported outcome network analyses.

01-08-2026

Annals of surgical oncology

ASO Visual Abstract: Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

01-08-2026

Annals of surgical oncology

Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

01-08-2026

Nature communications

Molecular profiling and access to treatment for rare cancers in Europe.

23-07-2026

Journal of clinical oncology : official journal of the American Society of Clinical Oncology

Reply to: In DeFi-ance of "More Is Better": Questioning Long-Term Nirogacestat Use in Desmoid Tumors.

20-07-2026

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

Self-reported peripheral neuropathic symptoms in long-term adolescent and young adult (AYA) cancer survivors: results of the SURVAYA study.

02-07-2026

Radiography (London, England : 1995)

Independent patient access to imaging digital health records: Oncology patients' and healthcare professionals' views and preferences.

01-07-2026

Annals of surgical oncology

Understanding Physical Functioning in Patients with Sarcoma After Amputation: Using an International Classification of Functioning, Disability and Health (ICF) Approach.

01-07-2026

Journal of medical genetics

Perspectives of adolescents and young adults with advanced cancer on complete genomic analysis in standard oncology care.

25-06-2026

Current oncology (Toronto, Ont.)

Coping with an Uncertain or Poor Cancer Prognosis as an Adolescent or Young Adult: A Cross-Sectional Cluster Analysis.

23-06-2026

European journal of cancer (Oxford, England : 1990)

Prognostic value for overall survival of the EORTC QLQ-C30 Summary Score: An analysis of 5 closed EORTC trials.

18-06-2026

Clinical cancer research : an official journal of the American Association for Cancer Research

Brigimadlin Versus Doxorubicin in Advanced Dedifferentiated Liposarcoma: Efficacy, Safety and Translational Data from Brightline-1, a Randomized Phase 2/3 Trial.

10-06-2026

Journal of cancer survivorship : research and practice

Perspectives of patients, partners, primary and hospital-based health care professionals on living with advanced cancer and systemic treatment.

01-06-2026

Cancer research

Targeting the Non-Homologous End Joining Pathway Sensitizes MDM2-Amplified Liposarcoma to Doxorubicin by Enhancing p53-Mediated Senescence.

01-06-2026

Current oncology (Toronto, Ont.)

Quality of Life and Healthcare Experiences of Patients with Anal Cancer: A Mixed-Methods Study.

05-05-2026

BMJ open

Pre-diagnostic route reported by patients with sarcoma from the Netherlands, the UK, Australia and New Zealand: early detection challenges for general practitioners - an international observational cohort study.

04-05-2026

Cancer imaging : the official publication of the International Cancer Imaging Society

Improving patient understanding of oncology imaging: radiologist and patient evaluation of summarised versus full-length AI-simplified reports from a tertiary cancer centre.

13-04-2026

Journal of cancer survivorship : research and practice

Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

01-04-2026

Annals of oncology : official journal of the European Society for Medical Oncology

Doubting T(h)OMAS: has the era of precision oncology arrived in uterine leiomyosarcoma?

01-04-2026

Journal of gastrointestinal cancer

Quality of Life and Experiences of Patients with Gastrointestinal Stromal Tumors (GIST) on Imatinib Treatment.

10-03-2026

Journal of cancer survivorship : research and practice

Hospitalization for medical conditions in adolescent and young adult cancer survivors: a nationwide cohort study using the Netherlands Cancer Registry.

07-03-2026

Clinical breast cancer

Long-Term Health Issues of Adolescent and Young Adult Breast Cancer Survivors.

01-03-2026

Health and quality of life outcomes

Incorporating patients' input in the development and validation of patient-reported outcome measures in oncology: a comprehensive scoping review.

18-02-2026

JCO clinical cancer informatics

Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph.

01-01-2026

The Lancet. Oncology

Development of a core outcome set for adolescents and young adults with cancer.

01-01-2026

Journal of cancer survivorship : research and practice

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

01-12-2025

Journal of clinical oncology : official journal of the American Society of Clinical Oncology

Efficacy and Safety of Long-Term Continuous Nirogacestat Treatment in Adults With Desmoid Tumors: Results From the DeFi Trial.

01-12-2025

JAMA oncology

Guidelines for Next-Generation Sequencing in Sarcoma Diagnosis and Treatment: A Consensus Review.

01-12-2025

Cancer treatment reviews

How to foster new treatment development in ultra-rare tumours? Joint EMA-EORTC multi-stakeholder workshops on ultra-rare sarcomas as a model for rare cancers.

01-11-2025

EClinicalMedicine

Health-related quality of life in patients with advanced soft tissue sarcoma receiving first-line palliative chemotherapy (HOLISTIC): longitudinal results from a prospective, observational cohort study.

01-11-2025

Head & neck

Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study.

01-11-2025

Cancer treatment reviews

Genomic distinctions in adolescent and young adult cancer: A comprehensive review.

01-11-2025

Cancer treatment reviews

Overcoming the barriers to treatment of rare cancer patients in the era of precision oncology: A call to action.

01-11-2025

Psycho-oncology

Health-Related Quality of Life in Adolescents and Young Adults With an Uncertain or Poor Cancer Prognosis: Quantitative Baseline Results of the CORD-AYA Study.

01-11-2025

ESMO open

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

01-10-2025

International journal of cancer

Socioeconomic impact among and socioeconomic support services for adolescents and young adults with cancer: A European perspective.

01-10-2025

The Lancet regional health. Europe

5-Year conditional relative survival of adolescents and young adults with solid malignancies in the Netherlands: a population-based cohort study.

01-10-2025

Journal of cancer survivorship : research and practice

Associations of adherence to the World Cancer Research Fund lifestyle recommendations with health-related quality of life and fatigue in Adolescent and Young Adult (AYA) cancer survivors: results from the SURVAYA study.

08-09-2025

The Lancet. Oncology

Importance of responder criteria for reporting health-related quality-of-life data in clinical trials for advanced cancer: recommendations of Common Sense Oncology and the European Organisation for Research and Treatment of Cancer.

01-09-2025

Psycho-oncology

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

01-09-2025

Journal of cancer survivorship : research and practice

Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer.

01-08-2025

From registration to insight: how STRONG AYA transforms registry data to enhance decision-support tools for adolescent and young adult oncology.

RINGSIDE Phase II Study of Varegacestat for Treatment of Desmoid Tumors: A Randomized Dose-Finding Clinical Trial.

Distinguishing AYA oncology from early-onset cancer.

Reporting health-related quality of life in randomised clinical trials evaluating adjuvant systemic therapy: recommendations of Common-Sense Oncology and the European Organisation for Research and Treatment of Cancer.

ESR Bridges: new developments in imaging and treatment of soft tissue sarcoma-a multidisciplinary view.

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.

Access to cancer clinical trials in Europe: when trial availability does not match patient need.

Advancing cancer care for adolescents and young adults: the role of the European Network of Expertise.

ASO Author Reflections: Beyond Time to Diagnosis: The Lasting Impact of Diagnostic Experience in GIST.

Symptom burden in young adult brain tumor survivors: Key intervention targets based on patient-reported outcome network analyses.

ASO Visual Abstract: Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

Molecular profiling and access to treatment for rare cancers in Europe.

Reply to: In DeFi-ance of "More Is Better": Questioning Long-Term Nirogacestat Use in Desmoid Tumors.

Self-reported peripheral neuropathic symptoms in long-term adolescent and young adult (AYA) cancer survivors: results of the SURVAYA study.

Independent patient access to imaging digital health records: Oncology patients' and healthcare professionals' views and preferences.

Understanding Physical Functioning in Patients with Sarcoma After Amputation: Using an International Classification of Functioning, Disability and Health (ICF) Approach.

Perspectives of adolescents and young adults with advanced cancer on complete genomic analysis in standard oncology care.

Coping with an Uncertain or Poor Cancer Prognosis as an Adolescent or Young Adult: A Cross-Sectional Cluster Analysis.

Prognostic value for overall survival of the EORTC QLQ-C30 Summary Score: An analysis of 5 closed EORTC trials.

Brigimadlin Versus Doxorubicin in Advanced Dedifferentiated Liposarcoma: Efficacy, Safety and Translational Data from Brightline-1, a Randomized Phase 2/3 Trial.

Perspectives of patients, partners, primary and hospital-based health care professionals on living with advanced cancer and systemic treatment.

Targeting the Non-Homologous End Joining Pathway Sensitizes MDM2-Amplified Liposarcoma to Doxorubicin by Enhancing p53-Mediated Senescence.

Quality of Life and Healthcare Experiences of Patients with Anal Cancer: A Mixed-Methods Study.

Pre-diagnostic route reported by patients with sarcoma from the Netherlands, the UK, Australia and New Zealand: early detection challenges for general practitioners - an international observational cohort study.

Improving patient understanding of oncology imaging: radiologist and patient evaluation of summarised versus full-length AI-simplified reports from a tertiary cancer centre.

Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

Doubting T(h)OMAS: has the era of precision oncology arrived in uterine leiomyosarcoma?

Quality of Life and Experiences of Patients with Gastrointestinal Stromal Tumors (GIST) on Imatinib Treatment.

Hospitalization for medical conditions in adolescent and young adult cancer survivors: a nationwide cohort study using the Netherlands Cancer Registry.

Long-Term Health Issues of Adolescent and Young Adult Breast Cancer Survivors.

Incorporating patients' input in the development and validation of patient-reported outcome measures in oncology: a comprehensive scoping review.

Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph.

Development of a core outcome set for adolescents and young adults with cancer.

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

Efficacy and Safety of Long-Term Continuous Nirogacestat Treatment in Adults With Desmoid Tumors: Results From the DeFi Trial.

Guidelines for Next-Generation Sequencing in Sarcoma Diagnosis and Treatment: A Consensus Review.

How to foster new treatment development in ultra-rare tumours? Joint EMA-EORTC multi-stakeholder workshops on ultra-rare sarcomas as a model for rare cancers.

Health-related quality of life in patients with advanced soft tissue sarcoma receiving first-line palliative chemotherapy (HOLISTIC): longitudinal results from a prospective, observational cohort study.

Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study.

Genomic distinctions in adolescent and young adult cancer: A comprehensive review.

Overcoming the barriers to treatment of rare cancer patients in the era of precision oncology: A call to action.

Health-Related Quality of Life in Adolescents and Young Adults With an Uncertain or Poor Cancer Prognosis: Quantitative Baseline Results of the CORD-AYA Study.

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

Socioeconomic impact among and socioeconomic support services for adolescents and young adults with cancer: A European perspective.

5-Year conditional relative survival of adolescents and young adults with solid malignancies in the Netherlands: a population-based cohort study.

Associations of adherence to the World Cancer Research Fund lifestyle recommendations with health-related quality of life and fatigue in Adolescent and Young Adult (AYA) cancer survivors: results from the SURVAYA study.

Importance of responder criteria for reporting health-related quality-of-life data in clinical trials for advanced cancer: recommendations of Common Sense Oncology and the European Organisation for Research and Treatment of Cancer.

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

Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer.

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