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The Rory Morrison WMUK Registry 

Poster showing Registry data findings
The Rory Morrison WMUK Registry (RMR) collects information to help us understand the WM landscape in the UK and to gain an accurate picture of this complex disease. Its ultimate aim is to help improve treatment and one day find a cure. Patient involvement is vital to its success and this section includes information about how to make sure your data is included.

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.

What have we learnt so far from The Rory Morrison WMUK Registry?

Read the first RMR Report 2018

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.

Rory Morrison
Rory Morrison

Get involved

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 registry@wmuk.org.uk to find out how they can participate.

Read our Frequently Asked Questions about the RMR

England

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

Bart’s Hospital
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

Torbay Hospital
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

Christie Hospital
Wilmslow Road, Manchester, M20 4BX
Dr Kim Linton
Dr Richard Chasy

Aintree Hospital
Lower Lane, Liverpool, Merseyside, L9 7AL
Dr Jeffery Smith

St James's University Hospital
Beckett Street, Leeds, LS9 7TF
Dr Roger Owen

Wales

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: registry@wmuk.org.uk. 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 registry@wmuk.org.uk. 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:

  1. European Organisation for Research and Treatment of Cancer (EORTC) QLQ C30 questionnaire
  2. Hospital Anxiety and Depression Score (HADS) questionnaire
  3. Brief Illness Perception Score (BIPS) questionnaire
  4. 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.