Hi forum family,
We hope you’re all doing okay? We are just sharing a piece of research on behalf of the organisation MDS UK Patient Support Group.
If anyone in our forum community affected by myelodysplastic syndromes (MDS) would like to have their say, here are a few more details from them below:
Opportunity to influence the information collected in clinical trials for MDS
The MDS Delphi survey is about finding out what OUTCOMES are most important to measure, when running MDS clinical trials.
Several OUTCOMES can be measured, but doctors or researchers or patients will have different opinions on what is really important to them.
The Delphi survey will find ALL the OUTCOMES which doctors, researchers and patients all agree with.
That result is then called the CORE OUTCOME SET (in other words the main group of important outcomes, or results), and will be used in clinical trials, to measure efficacy and benefit of new drugs.
Here is also a 3min video which explains the definition of a CORE OUTCOME SET: https://www.youtube.com/watch?reload=9&v=g1MZi2mzK1U
This survey WILL make a difference in how future clinical trials in MDS will be conducted, and what information will be collected.
Remember – you are the patients, carers and advocates. Only you can provide the patient voice for preferences in MDS.
If you do not say what is important for YOU, other people will decide for you.
Take part here:* *https://delphimanager.liv.ac.uk/MDSDelphi
You will need to register first, then answer questions for about 20min.