The WM-VOICE study is looking for UK patients to share their views anonymously as a part of first-of-its-kind study, looking at the treatment preferences of WM patients.
The study – full name WM-VOICE study: Patient preferences on treatment options for Waldenstrom macroglobulinemia: An international discrete choice experiment – is being conducted by researchers from the haematology department of Amsterdam UMC in collaboration with WM patients and experts, including WMUK.
Background:
In 2022, researchers from the haematology department of Amsterdam UMC published the first ever scientific study which looked at WM patient preferences for treatment. The initial study was conducted only in the Netherlands but brought up some interesting findings.
The researchers wanted to broaden this study to get a wider range of data, to show a better understanding of patient preferences from varying countries, which is why they are now rolling the study out internationally. WMUK and members of our Patient Advisory Group (PAG) worked closely with the researchers at Amsterdam UMC, helping to form the survey and ensure that it is relevant to the UK audience and truly reflects what is important to WM patients.
The study hopes to provide a better understanding of patient preferences when looking at treatment, which will allow more informed conversations between clinicians and patients as well as the potential to set priorities in clinical trials in the future.
Study Details:
The WM-VOICE study is scientific research about Waldenstrom’s macroglobulinaemia (WM).
The study focuses on what patients with WM value most in their treatment.
The study is conducted by researchers at the department of Amsterdam UMC, in collaboration with WM experts and patients in the UK, USA, Australia, Canada and the Netherlands.
Participation in the study is completely anonymous.
This study is non-commercial, and no pharmaceutical companies are involved in this study.
Relevance of the study:
Although there are more treatment options now available to WM patients, WM treatments vary in how effective they are, their side effects, how they are given, and how long they are taken for, and we don’t know what options people with WM prefer.
The survey aims to change that by asking WM patients from across the globe their opinions. By improving our understanding of patient preferences, clinicians might be able to better tailor treatments to individuals’ needs. It may also help to better set priorities in drug development and trial design in the future.
The results will be published in a scientific journal and presented at an international haematology conference.
Who can participate in the study?
All patients living with WM, living in the UK, USA, Australia, Canada and the Netherlands are welcome to take part in the survey.
It does not matter how many treatments for WM you have had.
Individuals with WM who have not undergone any treatment are also welcome to take part.
How does the survey work?
The survey is accessible online through the links below, but please note the following:
Participation in this survey is anonymous.
We recommend using a computer, rather than a smartphone, to fill out the survey.
Allow at least 30 minutes to complete the survey.
The survey must be completed in one session – you cannot pause and come back to it at a later point.
The survey is available in English, Quebec-French, and Dutch:
For English, click here: www.amsterdamumc.org/wm-voice-eng
For Québec French, click here: www.amsterdamumc.org/wm-voice-fr
For Dutch, click here: www.amsterdamumc.org/wm-voice-nl