The Rory
Morrison WMUK Registry
The Rory Morrison WMUK Registry (RMR) is a research project managed by WMUK. It collects data from hospitals and WM patients to help us better understand the disease, improve treatment and care, and one day find a cure.
Patient involvement is key to the RMR’s success. It is only with your information that researchers and clinicians can learn more about living with WM, how treatments affect the body and your quality life, and start to make improvements in care. Find out more about how to get involved.
What does the RMR do?
The RMR is a data-led research project. Working with centres across the UK, it gathers data from WM patients. The data collected covers the entire patient experience, from diagnosis, through treatment, complications and related conditions like Bing Neel syndrome, peripheral neuropathy and cryoglobulinaemia. This gives researchers unique insight into life with WM.
The RMR collects two types of data:
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Clinical data: this comes directly from the participating centres
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Quality of life: this is collected via a questionnaire sent directly to patients at regular intervals. Find out more about the quality of life arm of the RMR.
You can read more about how the RMR fits into the wider research cycle below.
How does the RMR make a difference?
Researchers analyse the data collected through the RMR, spotting patterns and trends. These can then help us to learn how it affects people, driving changes in care and improvements in treatment.
By publishing the latest findings from the data, we can push WM research – giving scientists the real-world evidence they need to get funding for larger-scale research projects that could develop and test new treatments. Likewise, findings in quality of life data can help clinicians make decisions to improve care and treatment regimens.
The RMR is managed by WMUK. A Research Committee of trustees, clinicians and patients works together with researchers to identify key priorities for the Registry, so we can make the most out of the data and drive the research that has real potential to benefit patients.
How do I get involved?
If you are under the care of one the participating centres, your clinical data will be automatically included in the RMR. All data is uploaded on our secure online database by local clinicians and data managers, and is anonymised.
If your centre isn’t participating, you can request a referral to one of the listed centres for the purposes of capturing your data. This doesn’t mean you have to transfer all your care to this centre, but clinician will need to transfer the required data to the RMR centre so they can upload it.
You can also talk to your clinician about joining the RMR. If they’re interested in learning more, direct them to email the RMR team for more information: registry@wmuk.org.uk
What centres are involved in the RMR?
The list of participating centres is always growing. Scroll through to check if your centre is listed. If your centre isn’t listed and you want to take part in the RMR, find out how here.
Centre
University College London Hospitals
Healthcare Professional
Dr Shirley D’Sa
The Royal Marsden Hospital
Dr Dima El-Sharkawi
King’s College Hospital
Dr Kirsty Cuthill
Bart’s Hospital
Dr Rebecca Auer
Northwick Park Hospital
Dr Agapi Parcharidou
Royal United Hospital
Dr Josephine Crowe
Oxford University Hospitals
Dr Jaimal Kothari
East Kent University Hospitals
Dr Jindriska Lindsay
Royal Bournemouth Hospital
Dr Helen McCarthy
Torbay Hospital
Dr Deborah Turner
University Hospitals Birmingham
Dr Guy Pratt
Christie Hospital
Drs Kim Linton & Richard Chasy
Aintree Hospital
Dr Jeffrey Smith
St James’s University Hospital
Dr Roger Owen
Hammersmith Hospital
Dr Maria Atta
United Lincolnshire Hospitals
Dr Gamal Sidra
Barnet Hospital
Veronica Conteh
University Hospital Plymouth
Nicola Crosbie
North Bristol NHS Trust
Suriya Kirkpatrick
Nevill Hall Hospital
Dr Nilima Parry-Jones
Cardiff and Vale Health Board
Dr Simona Gatto
What about quality of life data?
The RMR also includes a standalone project called the ‘Health Related Quality of Life (HrQoL) Outcomes Observation Project. This project collects data directly from patients and concentrates on aspects of their life outside of clinical data, like mobility and mental health.
By taking part in the survey, you can ensure your voice is being heard and feel empowered to know you are having a meaningful impact in changing care now and in the future.
The data is collected through regular surveys sent to patients. Any patient – regardless of where they are being treated – can join this study. It’s really easy to get involved; just email the team at registry@wmuk.org.uk.
Find out more about PROMs and the difference you can make
Find out more about the Health Related Quality of Life Outcomes Project here.
