Patients and their families heard about the latest in MDS research and treatment
The latest MDS UK Patient and Family Forum took place in Harrogate on Friday 22nd March.

It was an invaluable opportunity for those affected by MDS to hear about the latest developments in MDS research and treatment.

The meeting was open to MDS patients and their guests, as well as clinical staff. Patients and their families had the opportunity to participate in informal discussion regarding their quality-of-life issues, new clinical trials, new diagnostic methods, therapies and treatment options.

The day also included presentations by MDS experts, guest speakers and patients. The list of speakers included Prof David Bowen, Consultant Haematologist, St. James's Institute of Oncology, Leeds, Dr Simone Green, Castle Hill Hospital, Cottingham, Hull and Dr Anjum Khan, St. James's Institute of Oncology, Leeds, among others.


New advances in MDS & emerging treatment options 

by Dr Catherine Cargo

  • Advances in understanding MDS genetic biology
  • How can this help in the diagnosis, risk assessment & treatment?

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Clinical Trials in MDS

by Dr Simone Green

  • Which clinical trials are open to recruitment in the UK?
  • What are their aims?

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What are Myelodysplastic Syndromes and what are their current treatment options
by Prof. D. Bowen

  • What is MDS?
  • What are the goals for treatment?
  • How do we treat MDS in the UK in 2019?

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The European MDS Registry
by Dr Catherine Langton

  • What is a Registry Trial?
  • How can it improve the lives of patients?

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IPSS-R MDS Risk Assessment Calculator

Revised International Prognostic Scoring System (IPSS-R) for Myelodysplastic Syndromes Risk Assessment Calculator


Click here

MDS Fact Sheet

MDS Factsheet for GPs General Practicioners

MDS Fact Sheet

Click here

Varicella Vaccine in MDS

Urgent Clarification on varicella vaccine policy

Current advice from the UK MDS Forum is not to give the Live Varicella Vaccine to patients with MDS.

Please read below correspondence between Professor Salisbury and Dr George Follows, the latter on behalf of the CLL Forum, on the varicella vaccine policy.
This is an external link to the British Society for Haematology  Click here

NICE Guideline

Lenalidomide for treating myelodysplastic syndromes (MDS) associated with an isolated deletion 5q cytogenetic abnormality.

NICE logo

Click here

BSH Guidelines

This is an external link to the home of the British Society for Haematology (BSH). 

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Click here