The Rory Morrison Registry (RMR) for Waldenström's Macroglobulinaemia (WM), named after Rory Morrison, the beloved BBC news reader and continuity presenter, has been set up to capture ‘real world’ data about patients with WM (and related conditions) in the UK.
Although WM is a rare disease, there have been significant advances in recent years in the understanding of WM and its treatment. The RMR aims to understand the impact that these novel therapies are having on not only patients’ survival and comorbidities, but also the impact on quality of life. It is different from national data collection initiatives because it aims to monitor the whole patient pathway including complications and outcomes, specifically relevant to WM and related conditions.
A consortium of the WMUK Charity, doctors, patients and Dendrite Clinical Systems is running the RMR Project. WMUK is a registered charity dedicated to improving outcomes for patients with WM and related conditions by bringing WM patients and medical professionals closer together. Dendrite is a British company specialising in disease registry database systems. The project lead is Dr. Shirley D’Sa, Consultant Haematologist and Lead of the WM Service at UCLH, in conjunction with a dedicated clinical fellow who is based at UCLH and is in close liaison with participating centres.
Your written consent is not needed for inclusion of your data. Approval has been received from the Confidentiality Advisory Group (CAG) of the Health Research Authority (HRA) for the upload of patient data without specific consent. All data collected is subject to strict rules of confidentiality under Acts of Parliament, including the Data Protection Act 2018 and the Health and Social Care Act 2001. No patient identifiable data will be shared or released. You should, however, express any concerns you have about the inclusion of your data in the Registry.
If it is your wish that your data is not included, you should email us at email@example.com to opt out of the RMR project. This will not in any way affect the care that you receive.
Further information can be found on the WMUK website.