The Rory Morrison WMUK Registry (RMR) brings together data from patients with WM and related conditions including Bing Neel syndrome (BNS), peripheral neuropathies such as anti-MAG neuropathy, cold agglutinin disease (CAD) and cryoglobulinaemia.
Doctors in the hospitals that treat WM patients can join the project and upload information about their patients directly onto the RMR.
These “real-world” data can be used to answer key questions about WM such as:
- the time from diagnosis to treatment
- the symptoms that indicate treatment is needed
- response rates to treatments
- the variety of treatments used and changing patterns
- the impact and value of new treatments, eg. Ibrutinib
- how WM impacts on quality of life of patients
The uniqueness of the RMR is that it collects and analyses data across the whole patient pathway, including complications and outcomes specific to WM.
The RMR contains two important but different types of data:
- clinical data from the medical teams in participating centres
- quality of life data direct from patients - this is collected via a questionnaire distributed at regular intervals by email directly to patients
A list of current participating centres can be found here, although you do not have to be treated at one of the participating centres to have your data included.
Who is Rory Morrison?
The Registry is dedicated to the memory of Rory Morrison, the much-loved BBC Radio 4 broadcaster who had WM and sadly died in 2013. Rory was one of the first contributors to the Registry.
The centres participating in The Rory Morrison WMUK Registry (RMR) are listed below.
If your centre is not on the list, you could request a referral to one of the listed centres for purposes of capturing your data. This does not mean you have to transfer all your care to this centre.
If your regular consultant is not at one of the listed centres please encourage them to contact email@example.com to find out how they can participate.
UCLH NHS Foundation Trust
Cancer Division, 3rd Floor West, 250 Euston Road, London NW1 2PG
Dr Shirley D’Sa
The Royal Marsden Hospital
Downs Rd, Sutton, SM2 5PT
Dr Dima El_Sharkawi
King’s College Hospital
Denmark Hill, London, SE5 9RS
Dr Kirsty Cuthill
W Smithfield, London, EC1A 7BE
Dr Rebecca Auer
Northwick Park Hospital
Watford Road, Harrow, HA1 3UJ
Dr Chara Kyriakou
Royal United Hospital
Combe Park, Bath, BA1 3NG
Dr Josephine Crowe
Oxford University Hospitals NHS Foundation Trust
Churchill Hospital, Old Road, Headington, Oxford OX3 7LE
Dr Jaimal Kothari
East Kent University Hospitals NHS Foundation Trust
Ethelbert Rd, Canterbury CT1 3NG
Dr Jindriska Lindsay
Royal Bournemouth Hospital
Castle Lane East, Bournemouth, BH7 7DW
Dr Helen McCarthy
Lowes Bridge, Torquay, TQ2 7AA
Dr Deborah Turner
University Hospitals Birmingham NHS Foundation Trust
Birmingham, B15 2GW
Dr Guy Pratt
Leicester Royal Infirmary
Department of Haematology, 2nd Floor, Sandringham Building, Leicester, LE2 7LX
Dr Rajesh Krishna
Lower Lane, Liverpool, Merseyside, L9 7AL
Dr Jeffery Smith
St James's University Hospital
Beckett Street, Leeds, LS9 7TF
Dr Roger Owen
Nevill Hall Hospital
Brecon Road, Abergavenny NP7 7EG, Wales
Dr Nilima Parry-Jones
Health Related Quality of Life (HrQoL) Outcomes Observation Project (QoL-WM)
This is a standalone project that aims to collect information about health and well-being directly from patients with Waldenstrom's macroglobulinaemia, through Patient Record Outcome Measures (PROMs) surveys. By taking part in this project, patients can have their voice heard and make a meaningful impact in changing care and treatment now and in the future.