Collecting Patient Data to Improve Care
Blood cancers like leukaemia, myeloma and lymphoma affect thousands of Australians and New Zealanders every year. To improve outcomes for people with blood cancers, it’s vital to understand key components of diagnosis and treatment and how these diseases behave over time. ALLG’s National Blood Cancer Registry (NBCR) research initiative plays a vital role in this process by collecting comprehensive, real-world health data from blood cancer patients across their cancer journey. This information, along with the collection of biospecimen samples, supports research discoveries, guides new clinical treatments and helps clinician researchers to improve patient care now and in the future.
Why Real-World Patient Data Matters
Clinical trials demonstrate the effectiveness and superiority of new treatments and therapy combinations and the NBCR captures how this treatment works in everyday life, from patient to patient. Patients vary from age to health status to genetic makeup, all of which may influence how effectively a treatment works for their cancer. The National Blood Cancer Registry collects detailed, long-term patient information to help address this, including information about diagnosis, treatment approaches, side effects, and overall outcomes.
By gathering this comprehensive data, the NBCR provides researchers with a more accurate picture of how treatments work across diverse patient populations. By helping to identify patterns in responses to therapies, researchers can drive new, innovative treatments that are more effective for specific groups of patients. Ultimately, this real-world evidence contributes to more personalised cancer care, along with safer and more effective treatments.
The NBCR demonstrates the power of collaboration between patients, clinicians and researchers. By turning comprehensive patient health data into actionable research insights, it is accelerating Better treatments…Better lives for people living with blood cancer.
Driving Research Discoveries
The NBCR is a powerful tool that aims to help clinician-researchers to uncover new insights into blood cancers. Researchers use the registry to explore important questions, such as which treatments are most effect for different types of blood cancer, how patient outcomes evolve and which therapies will drive future clinical trials.
With over 5000 patients now registered to the platform, there is a growing pool of real-world evidence to help the community, clinicians and policy makers to:
- Understand the risk factors and causes of different blood cancers including leukaemias, lymphomas and myelodysplastic syndromes (MDS)
- Improve treatments to help blood cancer patients live healthier, longer lives
- Drive forward new research and new patient treatments
- Provide insights to help personalise care
- Discover ways to predict or reverse disease changes
The ALLG Biobank
The NBCR works hand in hand with the ALLG Biobank, which is a secure facility that stores blood and tissue biospecimen samples from patients with blood cancer. These samples, linked with the detailed health data collected by the NBCR, help to fuel future research.
As not-for-profit organisation, the ALLG is dedicated to advancing blood cancer research for better, more effective treatments for patients. Sustained funding to the NBCR is vital to maintaining and growing this important research resource, to support future research and clinical trials that improves outcomes for blood cancer patients.
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