Rory Morrison Registry for WM and IgM-related Conditions

• Research type

  Research Database

• IRAS ID

  364183

• Contact name

  Shirley D'Sa

• Contact email

  s.d'sa@nhs.net

• Research summary

  Rory Morrison Registry for WM and IgM-related Conditions

• REC name

  London - South East Research Ethics Committee

• REC reference

  25/LO/0867

• Date of REC Opinion

  23 Feb 2026

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  This project will create a secure national registry for people diagnosed with Waldenström macroglobulinaemia (WM) and related IgM-associated conditions. The aim is to improve understanding of these rare diseases, how they affect patients, and how treatments work in real life.

  When a patient is first entered into the registry, basic information such as date of birth, NHS number, gender, date and place of diagnosis, symptoms, other medical conditions, performance status and level of social deprivation will be recorded. Details of the specific diagnosis (e.g. WM, amyloidosis, neuropathy, cold agglutinin disease) and results of tests such as blood tests, bone marrow results and scans will also be collected.

  Only the patient’s own clinical team will be able to see personal identifiable information. All personal data will be securely encrypted so it cannot be viewed by others.

  The registry will also record treatments given, including the reason for treatment, type of treatment, whether part of a clinical trial, and how well it works. Follow-up information such as test results, symptoms, infections and disease response will be collected at each clinic visit for up to 15 years, or until death, to understand long-term outcomes.

• Research programme

  The Rory Morrison Registry (RMR) is a UK-wide clinical database for people with Waldenström macroglobulinaemia (WM) and related IgM conditions. It was created with input from doctors, patients, and the charity WMUK to support better care, research, and understanding of these rare diseases. The Registry was funded almost entirely by the WM patient community, reflecting exceptional commitment from families and supporters. Their fundraising enabled the development of a secure NHS-based database with strong safeguards to protect patient information. Only anonymised data can be shared for research, and all requests are reviewed by an independent committee that includes clinicians, a patient representative, and WMUK trustees. A dedicated data analyst at UCLH, funded for two years, will support data management and research publication. The Registry is designed to collect both clinical information and patient-reported experiences, helping to build a complete picture of living with WM. Ongoing running costs are supported through patient fundraising and international charity contributions, showing long-term belief in the Registry’s value. The RMR is recognised as a model of excellence, driven by patients and clinicians working together to improve care and outcomes for everyone affected by WM.

• Research database title

  Rory Morrison Registry for WM and IgM-related Conditions

• Establishment organisation

  University College London Hospitals NHS Foundation Trust

• Establishment organisation address

  Cancer Division

  3rd Floor West

  250 Euston Road

  NW1 2PG