Much of the cutting-edge research into WM takes place internationally. Centres such as Dana Farber in Boston, USA, are leading the way in the development and testing of new treatments.
The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a significant funder of WM research and has taken a leading role in identifying the priorities for WM research. In 2015, the IWMF and the Leukaemia and Lymphoma Society (LLS) brought together an international group of researchers, doctors, and industry representatives to develop a Strategic Research Roadmap Initiative for WM. The UK was represented by Dr Shirley D’Sa from University College Hospitals London (UCLH) and Dr Roger Owen from St James’ Institute for Oncology, Leeds.
Strategic Research Roadmap Initiative research priorities:
- Signalling – what pathways do WM cells use for communication?
- Immunology/immunotherapy – how can we better use our own immune system to fight WM?
- Tumour microenvironment – how does the bone marrow / tumour environment affect WM cells?
- ‘Omics’ – what else can we learn about genomics, epigenomics, and mutations in WM cells?
Read more about the research priorities.
Read about research projects funded under the Strategic Research Roadmap Initiative.
WM researchers from around the world come together at a biennial International Workshop on WM to share their research findings and collaborate on new approaches.
What’s happening in the UK?
Our main research programme focuses on the collection of clinical and PROMS (patient reported outcomes) data through The Rory Morrison WMUK Registry (RMR), to better understand WM, treatments and the impact on quality of life.
In 2015, Dr Shirley D’Sa received funding from WMUK and IWMF to develop a biobank for WM in the UK. Saliva samples from WM patients have been collected and stored, alongside donated serum, in a biobank hosted by University College London Hospitals (UCLH).
In 2019, Dr D’Sa started a collaboration with the National Institute for Health in the United States, providing them with over 100 samples from the biobank in order to look for previously undiscovered genetic causes of WM. This analysis focuses on familial cases of WM.
Health Related Quality of Life (HrQoL) Outcomes Observation project (QoL-WM)
This is a research project run through The Rory Morrison WMUK Registry (RMR), collecting information about health and well-being directly from WM patients so that we can better understand how WM impacts on daily life. Read more about the QoL-WM project here.
Clinical trials are research studies that test new medical treatments. There are clinical trials for WM taking place throughout the UK with a large number of novel therapies being tested in WM with promising results. Not all hospitals take part in clinical trials, however, it is worth asking your specialist about clinical trials when discussing treatment options. You do not have to take part in clinical trials and can always opt for standard treatment.