Transforming lymphoma outcomes through international real-world data collaborations: the Global Lymphoma Registry Alliance roadmap
Year: 2026
Type: article
Abstract: Lymphomas comprise a complex and heterogeneous group of malignancies which pose challenges in understanding their epidemiology, pathobiology, treatment responses and long-term outcomes. Evolving diagnostic classification and fast-paced therapy development compound these challenges. Robust real-world data (RWD) collection and analysis using clinical registries can contribute significantly to address gaps in understanding of practice variation and provide evidence for health technology assessments. However, to maximize the impact of lymphoma registries, and those in other diseases, there is a compelling need for global collaboration, data harmonization and automated integration between registries and other large datasets. Technologies that enable safer data sharing are already available, but historical legal frameworks and evolving privacy concerns are not keeping pace, undermining their intended purpose and limiting the full potential of available high-quality RWD to improve patient care. This White Paper written by the Global Lymphoma Registry Alliance (LyRA) discusses the importance and value of lymphoma registries for different stakeholders as well as benefits of forming a global alliance of the registry network. An alliance such as LyRA serves both academic endeavors and public interest through collaboration between patient and community organizations, policy-makers, regulatory authorities, industry and others seeking to use RWD. Bringing these stakeholders together and raising awareness more broadly will facilitate timely clinical trial result contextualization and innovation in public-private collaborations on novel trial emulations and designs, including external comparator cohorts. The LyRA leadership propose strategies for overcoming barriers to facilitate these key collaborations towards improving patient outcomes on a global scale.
Source: Haematologica
Authors: Eliza A. Hawkes, Eliza Chung, Mark J. Bishton, Natacha Bolanos, Andrew Evens, Massimo Federico, Georg Hess, Matthew J. Maurer, Zoe K. McQuilten, Susan K. Parsons, Michelle L. Poon, Karin E. Smedby, Diego Villa, Lorna Warwick, Erica M. Wood, James R. Cerhan, Martine Chamuleau, Chan Y. Cheah, Christopher R. Flowers, Herve Ghesquieres, Astrid Pavlosky, Marek Trneny, Adam Olszewski, Tarec C. El-Galaly
Institutions: Austin Health, Olivia Newton-John Cancer Research Institute, Monash University, Nottingham University Hospitals NHS Trust, University of Nottingham, Rutgers Cancer Institute, University of Modena and Reggio Emilia, Johannes Gutenberg University Mainz, Mayo Clinic, Tufts Medical Center, National University Cancer Institute, Singapore, National University Hospital, Karolinska University Hospital, Karolinska Institutet, University of British Columbia, Cancer Center Amsterdam, Amsterdam UMC Location Vrije Universiteit Amsterdam, The University of Western Australia, Sir Charles Gairdner Hospital, The University of Texas MD Anderson Cancer Center, Hospices Civils de Lyon, Hôpital Lyon Sud, Charles University, Brown University, Rhode Island Hospital, Miriam Hospital, Aarhus University, Aarhus University Hospital
Language: English
Subfield: Pathology and Forensic Medicine
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,157
OpenAlex ID: W7202373802
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