Protecting Long-Term Health
Lymphoid malignancies
Improving the care of lymphoma survivors, helping to predict treatment-related cardiotoxicity and tumor relapses using clinical and molecular features.
Addressing Survivorship Gaps
The Challenge: Navigating Life After Lymphoma
Lymphoid malignancies, commonly known as lymphomas, are cancers of the lymphatic system. They are one of the most common types of blood cancer. There are two main types: Hodgkin lymphoma and non-Hodgkin lymphoma. Non-Hodgkin lymphoma (NHL) is the most common, accounting for 80-75% of cases. In 2022, 215,000 new cases were reported in Europe. The five-year survival rate is 74%. Survival rates have improved, with an annual mortality rate of 3%. There are different types of NHL. Some grow faster and are more aggressive. They are classified according to molecular and pathological characteristics. Advanced age, male gender, and a weakened immune system increase the risk of developing the disease.
As survival rates increase, more NHL survivors are living with long-term health risks. These risks include relapse, secondary cancers, cardiovascular complications, and other late effects linked to previous treatments. Many of these complications can appear years after therapy ends, so long-term follow-up is critical. However, follow-up practices vary widely across countries and healthcare systems and often do not consider individual risk profiles.
Silent Complications
Treatment-related risks like cardiotoxicity and secondary cancers often appear years after therapy ends, requiring lifelong vigilance.
Inconsistent Follow-up
Care practices vary widely across Europe and often fail to consider an individual’s specific risk profile.
One of the key challenges in this area is the fragmented nature of available data. Information relevant to long-term outcomes is usually scattered across clinical records, laboratory results, imaging data, and patient-reported data. This makes it difficult to develop a comprehensive understanding of survivorship risks. Differences in data standards, access conditions, and governance further limit the reuse of this information for research and decision-making purposes.
Better integration and reuse of cancer data are therefore particularly important for lymphoid malignancies. Bringing together diverse data sources in a secure and responsible way can support earlier identification of patients at higher risk of complications, improve follow-up strategies, and reduce inequalities in long-term care. Addressing these challenges is essential to move towards more predictive, preventive, and patient-centred survivorship care across Europe.
Predictive Survivorship Care
The Use Case Objectives
The lymphoid malignancy Use Case focuses on improving risk prediction and long-term follow-up for survivors of non-Hodgkin lymphoma. Within UNCAN-Connect, this Use Case plays a dual role: it acts as a real-world application of the project’s data ecosystem and as a key contributor of high-quality, reusable cancer data.
- Identify survivors at higher risk of relapse or treatment-related complications such as cardiotoxicity.
- Generate evidence from multiple European healthcare settings to support personalised follow-up strategies.
- Integrate multimodal data, including molecular, imaging, and patient-generated health data (PGHD).
- Demonstrate secure data integration and governance in an interoperable environment.
The main objective of the Use Case is to identify lymphoma survivors who are at higher risk of relapse or of developing treatment-related complications, such as cardiotoxicity.By bringing together data from multiple European healthcare settings,the Use Case aims to generate evidence that supports more personalised follow-up strategiesand support a shift from reactive to more predictive and preventive survivorship care.
To achieve this, the Use Case contributes a broad range of data types reflecting the full patient journey. These include clinical information collected during diagnosis, treatment, and follow-up, as well as molecular and imaging data. In addition, the Use Case incorporates data that capture longer-term health status and daily functioning, such as quality-of-life information and patient-generated health data. Together, these data sources provide a more comprehensive view of survivorship outcomes than is typically available from isolated datasets.
The value of this data lies not only in its volume, but in its diversity and structure. The datasets represent different lymphoma subtypes, treatment approaches, and patient populations across several European countries, supporting more inclusive and representative research. The inclusion of longitudinal and patient-generated data enables the identification of early signals of deterioration or late complications that may otherwise go unnoticed.
Within UNCAN-Connect, the Use Case demonstrates how diverse cancer data can be integrated, governed, and reused in a secure and interoperable environment. It shows how harmonised datasets can support risk prediction, inform follow-up recommendations, and generate evidence relevant to clinical practice, research, and policy. In doing so, the Use Case contributes directly to the development of a sustainable European cancer data ecosystem.
A Roadmap for Better Outcomes
Expected Impact
The lymphoid malignancy Use Case is expected to deliver long-term impact within UNCAN-Connect and beyond by demonstrating the value of integrated and reusable cancer data for survivorship care. By contributing harmonised, high-quality datasets, the Use Case supports the project’s objectives of improving data interoperability, reuse, and cross-border collaboration in cancer research.
For researchers
For researchers, the Use Case enables access to diverse and longitudinal data that support more robust and inclusive studies on long-term outcomes, risk factors, and survivorship patterns in lymphoma. This strengthens the evidence base for understanding disease progression and treatment-related complications across different populations and healthcare systems.
For healthcare professionals
For healthcare professionals and health systems, the insights generated can support more evidence-based and risk-adapted follow-up strategies. By identifying patients who require closer monitoring, resources can be allocated more efficiently, reducing unnecessary interventions while improving early detection of relapse or late effects. This has the potential to improve care quality while reducing long-term healthcare costs.
For patients & survivors
Patients and survivors are expected to benefit from more personalised and proactive follow-up approaches that aim to reduce the burden of avoidable complications and improve quality of life. The inclusion of patient-generated and quality-of-life data also supports a more patient-centred perspective on survivorship.
A SUSTAINABLE RESEARCH LEGACY
At a broader level, the Use Case contributes to a sustainable European cancer data ecosystem by informing clinical guidelines, supporting health policy development, and addressing inequalities in long-term cancer care. By showing how federated and responsibly governed data can be reused for public benefit, the Use Case helps lay the foundation for more effective, equitable, and data-driven cancer survivorship strategies across Europe.