As you know, everything we do here at WMUK is geared toward helping patients with Waldenstrom’s macroglobulinaemia (WM) to live well. This includes research focussed on understanding more about WM, how it impacts lives and the current care provided.
For the past eight years, one important part of that work has been the Rory Morrison Registry — a clinical database used by healthcare professionals to gather information on WM.
But today, we want to let you know that as of 1st July 2025, the Rory Morrison Registry is now closed to new entries. This means it’s no longer possible to submit information to it.
Why we’ve made this decision
Closing the Registry wasn’t an easy decision. While it has been a valuable tool for understanding WM, over time it’s become clear that the Registry on its own isn’t delivering the improvements in patient outcomes that we had hoped for.
Running a clinical registry is also expensive, and as a charity funded entirely by the generosity of the WM community, we need to make sure every penny we spend delivers the greatest possible impact for people living with WM.
A shift towards patient-led data
Most importantly, we believe the future of WM research lies in listening directly to people living with WM. That means shifting towards collecting information that reflects not just medical treatments, but real-life experiences — the challenges of daily life, emotional wellbeing, the impact on family, and how people truly feel living with this condition.
This kind of patient-led data gives us a clearer, more meaningful picture of what support patients really need to live well with WM, and also where the gaps in provision are. It helps us to ensure our support, services and resources are designed around what really matters to the patients and their families.
It also help us to ensure that the needs of patients remain front and foremost as we work to advocate on their behalf within the broader healthcare system.
An example of this new focus is our current collaboration with the research company Health AI, where we’re looking closely at how care for WM varies across different parts of the UK. Early results are already showing differences in how quickly people are diagnosed and how easily they can access treatment. This kind of insight is vital for tackling inequalities and making sure no one is left behind.
Looking ahead — with you at the centre
Of course, there’s a real sense of sadness in saying goodbye to the Rory Morrison Registry. It’s played an important role in our work for many years, and we are deeply grateful to everyone who contributed to it. But we’re also excited about what comes next.
This next chapter puts patients firmly at the heart of everything we do — ensuring the WM community shapes the future of care, research, and support. Together, we can focus on what really matters: living well with WM.
If you have any questions or concerns about the closure of the Registry or about our future plans, please get in touch with us at support@wmuk.org.uk or call 0300 303 5870.
Thank you for being part of this community — we are excited about what’s to come.
