The UK MDS Forum was established with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials throughout the UK. We hope that you find the web site useful and would welcome suggestions for additions to the site.
We also strongly encourage colleagues from around the UK who are interested in the clinical and scientific aspects of MDS to join The Forum and help to make it a vibrant and inclusive organisation.
Dr Sally Killick, Secretary UK MDS Forum
COVID-19 virus is highly infectious and produces severe life-threatening pneumonia. The epidemiology is
becoming clearer, resulting in the definition of patient groups at highest risk for severe disease.
The general advice on Patient Support websites should be followed
https://mdspatientsupport.org.uk/coronavirus-mds-blood-cancer-advice/
The rapid guidance from NICE for systemic anti-cancer therapy in the COVID-19 outbreak should be followed
https://www.nice.org.uk/guidance/ng161
The UK MDS Forum proposes the following more specific guidance for the interventional management of MDS
patients during the period of highest risk from infection with COVID-19. There is a limited (or no clear) evidence
base for the majority of these recommendations which are practical and consensus in this unprecedented time
of crisis.
Download the attachment HERE
The NCRI MDS subgroup, UK MDS Forum and MDS UK patient support group have created a survey for MDS and AML patients and caregivers to complete regarding their management during the COVID-19 pandemic. The aim of this is to understand more about patients’ perspectives of the changes to their care that took place since the pandemic and also to gain some insight into their own experiences of COVID-19 if applicable. We hope to use the data to better inform us about any beneficial changes to practice that we can take forward to improve the care of MDS and AML patients and also to understand what barriers and difficulties patients came across during this period. Please pass this link on to your patients and their caregivers so that they can have their say.
The link to the survey is HERE
Venetoclax and hypomethylating agents (HMAs) induce high response rates in MDS, including patients after HMA therapy failure
Revised International Prognostic Scoring System (IPSS-R) for Myelodysplastic Syndromes Risk Assessment Calculator
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
Lenalidomide for treating myelodysplastic syndromes (MDS) associated with an isolated deletion 5q cytogenetic abnormality.
