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
You do not have to be treated at one of the participating centres to have your data included.
Quality of life data is collected via a questionnaire distributed at regular intervals by email direct to patients.
Scroll down to find out how to sign up.
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 firstname.lastname@example.org 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 project aims to collect information about health and well-being directly from WM patients so that we can better understand how WM impacts on daily life.
It is an opportunity to contribute to a unique research project that is capturing information about:
- Physical well-being
- Psychological well-being
- Social well-being
- Daily-life functioning
This is a stand-alone research project that any patient can join irrespective of whether your hospital is signed up to the Rory Morrison WMUK Registry (RMR). It involves completing a questionnaire every three months about how you feel on a day-to-day basis. The questionnaire will be sent to you by email.
How do I take part?
Contact the RMR team by email to express your interest and find out more: email@example.com. The team will then send you information about signing up.
You can opt out at anytime and withdraw from the project by contacting us by email at firstname.lastname@example.org. This will have no impact on the care you receive.
After signing up, you will receive an email four times a year from us with a link to an online version of four Quality of Life questionnaires:
- European Organisation for Research and Treatment of Cancer (EORTC) QLQ C30 questionnaire
- Hospital Anxiety and Depression Score (HADS) questionnaire
- Brief Illness Perception Score (BIPS) questionnaire
- EQ5D questionnaire
Your responses will be entered into the RMR and analysed as part of our research to understand how WM affects patients' quality of life.