Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, interviewed Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds. Watch the video and read the excerpts below.
What are the typical issues when you first diagnose a patient with MDS?
What difference does it make to you personally - in your daily consultations – to have a well-informed or empowered patient? Benefits/drawbacks?
"If the patient has some idea about what MDS is and they come with a set of questions from their own readings, that is a useful framework to find the details that are specific to them.
I usually use the MDS Patients Support Booklet... I mark the booklet and the sections that are relevant to them..." Prof. David Bowen
How important is it to have a treatment plan for MDS? Why?
What kind of difficulties do you encounter with explaining the concept of trials to patients? Do you have examples of a successful trial for a patient?
Clinical trials and the European MDS Registry Trial
Question: How frequently do you discuss clinical trials with your MDS patients? Are there any current trials that you are discussing at the moment?
Prof. Bowen: We are a major centre for MDS research, so we are very focused on clinical trials here in Leeds. Most of our patients are suitable for at least the Registry Trial. The Registry is essentially an opportunity to collect information about every patient's type of MDS and to use that information going forward, document that information about how that patient's MDS develops and what sort of treatment they have and what their response is to treatment.
That is a trial, a Registry Trial, very important to generate data that we call "real world data" or "community data" to record information about patients who are not in clinical trials for new drugs, but are nevertheless managed using conventional treatments.