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

Abstract

Summary National registries are used globally to characterise patient demographics, treatment choices and mortality to inform and improve clinical management. Waldenström 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.

Clinical and clonal characteristics of monoclonal immunoglobulin M‐associated type I cryoglobulinaemia

“…Other cohorts that are not screened report a lower proportion. The national WMUK Rory Morrison Registry of >1300 patients identified a prevalence of 7% 11 although this excludes those with other NHL. A Greek cohort of 595 patients with WM identified 5.5% with cryoglobulins 7 .…”

Patient reported outcome measures in Waldenström macroglobulinaemia: A real‐world data analysis from the WMUK Rory Morrison Registry

“…The Rory Morrison Registry is a national comprehensive data repository in the UK developed to ascertain real‐world data for patients with WM and its associated disorders [ 6 ]. Research ethics approval was obtained from the London—South East Research Ethics Committee (REC: 17/LOLO/1666).…”

“…They contained 58 questions and were distributed digitally on a quarterly basis to patients registered for PROMs. The discrepancy between the large denominator of patients on the registry with clinical data and the small number of PROM entries relates to the different routes of enrolment—the former through enrolment of clinical centres [ 6 ] and the latter via the direct recruitment of patients who specifically registered and consented for PROMs. Here, we reviewed the results from a snapshot of PROM questionnaires used to assess patient QoL in WM.…”

Born in the UK: A registry to improve and broadcast knowledge on Waldenström macroglobulinaemia

“…4 Using two questionnaires, this study showed that 10% of patients present stress levels identical to that of post-traumatic stress disorder and better QoL scores in patients treated with Bruton tyrosine kinase inhibitor. In their paper, Uppal et al 1…”

“…In their paper, Uppal et al 1 describe the different steps of the development of the Rory Morrison Registry (RMR), the UK registry for WM and IgM‐associated disorders, and present the first results on demographics, treatments and outcomes. Among the preliminary results reported, the authors point out the significant proportion of young patients (37% aged <60 years).…”