Take part in the Delphi survey: an URGENT call to patients and carers – Deadline: February 8th

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

Take part in this survey to influence how MDS clinical trials are run

An URGENT reminder about a slightly different type of questionnaire, run by the European big data project Harmony, which is doing research in haematological diseases, including MDS.

The Harmony project WILL provide answers to complex research questions.

This is a very interesting and slightly complex European survey. It was supposed to run last autumn, but progress was slow, as Covid took precedent.

The project has a now a strict deadline of the 8th February 2021.

It is of extreme importance that many patients, carers and advocates complete this questionnaire, as it will influence how MDS clinical trials are run in future and what outcomes are deemed important to concentrate on.

An opportunity to influence the information collected in clinical trials for MDS

The Harmony 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:

Have a say! A call to patients, carers and advocates

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 care and treatments.

If you do not say what is important for YOU, other people will decide for you, but it may not quite reflect your wishes and preferences.

Take part here: https://delphimanager.liv.ac.uk/MDSDelphi

You will need to register first, then answer questions for about 20min.

Here is also more information on Harmony: https://www.harmony-alliance.eu/for-patients-carers

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