The Rory Morrison WMUK Registry for Waldenstrom macroglobulinaemia: The growth of a national registry for a rare disorder

National registries are used globally to characterise patient demographics, treatment choices and mortality to inform and improve clinical management. Waldenstrom macroglobulinaemia (WM) is a rare, treatment-responsive B-cell lymphoproliferative disorder with diverse clinical features and variable outcomes. To prospectively chart changes in the management of WM in the UK, the Rory Morrison Registry (RMR) was developed to systematically collect real-world data. Here we describe the development of the RMR, demonstrate its feasibility and describe preliminary observations. The RMR was devised as a collaborative project between patients and clinicians, under the auspices of the UK Charity for WM in 2016. Patients may be registered after the point of diagnosis and those with historic diagnosis were also eligible. Data collection fields were compiled by focus groups of clinicians, patients, industry and commissioning partners. The RMR launched in November 2017 and as of March 2022, there were 22 participating centres and 1305 patients registered. Median follow-up was 6.4 years, five-year overall survival 90.7% (95% confidence interval [CI] 88.4%-92.5%) and 10-year overall survival 79.3% (95% CI 75.7%-82.4%). There has been a clear evolution in treatments including a rapid growth in the use of Bruton's tyrosine kinase inhibitors in relapsed disease since their availability in the UK.

Automated summary

National registries contribute to clinical management by collecting data on patient demographics, treatment choices and mortality. The Rory Morrison Registry (RMR) was developed in the UK to prospectively monitor changes in the management of Waldenstrom macroglobulinaemia (WM). Since its launch in 2017, the RMR has enrolled 1305 patients from 22 participating centers, showing a clear evolution in treatment strategies including an increasing use of Bruton's tyrosine kinase inhibitors in relapsed disease.