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

Abstract

Registries constitute an interesting source of real‐world data and bring complementary information to randomised controlled trials. They are of particular importance in rare diseases such as Waldenström macroglobulinaemia (WM), which can present with various clinical and biological features. In their paper Uppal and colleagues describe the development of the Rory Morrison Registry, the UK registry for WM and IgM‐related disorders and highlight the profound changes in therapies both at first‐line and relapsed settings in the recent years. Commentary on: Uppal E. et al. The WMUK Rory Morrison Registry for Waldenström Macroglobulinaemia: the growth of a national registry for a rare disorder. Br J Haematol. 2023;201:905‐912.

Knowledge and Awareness of Rare Diseases Among Healthcare Professionals in the Kingdom of Bahrain

“…Ultimately, the goal is to establish a national registry for all patients diagnosed with rare diseases. Registries serve as a source of real-world data, showcasing a range of clinical and biological features [20]. Regionally, the United Arab Emirates has initiated the development of a database encompassing genetic diseases found in the region [21].…”