Research & Data
In the NHS patient data is held in multiple individual medical records which can be accessed by healthcare professionals. This information is used to inform decisions about your care and treatment. These include public health systems such as those used for vaccination and immunisation programmes, GP record systems, hospital systems including diagnostic systems and community health systems.
What do we mean by data and why is sharing your data so important?
Patient data is medical information held about an individual patient. Patient data can include information relating on to your past and current health or illness, your treatment history, lifestyle choices and genetic data.
In the NHS, patient data is held in individual medical records which can be accessed by healthcare professionals. This information is used to inform decisions about your care and treatment.
This type of patient data is also fundamental to research to help identify effective treatments, monitor the safety of medicines and generate new knowledge about the causes of Waldenstrom's macroglobulinaemia. Collecting and sharing patient data is particularly important in a rare disease like WM as the patient population is so small, it is vital to collect data from as many patients as possible.
Findings of the research based on patient data can be used to improve patient care, improve patient outcomes and identify new treatments. At present data on WM patients is patchy and disjointed, we don’t know basic information like how many people have it, how they are being treated and where. Without this basic data it is harder to plan and target healthcare services and to run clinical trials to find new and effective treatments.
Information on WM is at present collected by different systems, that don’t always talk to each other, not all patients are seen at WM specialist centres or by a WM expert. So the data is disparate and WM is not always put under a standard WM disease code, which makes it harder for WM patients to be identified in health and care data.
We are asking every member of the WM community to share their data. It really can change your life and the lives of the next WM generation.
Rory Morrison Registry (RMR)
The Rory Morrison Registry (RMR) is where all our Waldenstrom's macroglobulinaemia data is collected and the registry is governed by WMUK and the WMUK Research and Governance committees. The RMR contains clinical WM data and some patients also complete PROMS (patient reported outcomes measures), essentially a questionnaire that asks you about your quality of life. This PROMS data is also held in RMR.
At present 26 hospitals contribute their WM data to RMR. Either a hospital or a consultant can decide to sign up to the registry, or as a patient you can request that your consultant shares your WM data with RMR.
Our aim is to get a minimum of 75% of WM patients data into RMR, both clinical and PROMS. At the moment we estimate that we have 25%.