The Patient Advocacy team are researching how delays in diagnosing myeloma affect patients’ quality of life. The research will inform a policy report to make NHS and Government decision makers aware of the link between delayed diagnosis and quality of life.Details
Myeloma UK funded a research project to find out if an app, The ChoiceApp©, could help UK patients with their treatment decisions. As part of the project, the app was shared with small groups of myeloma patients and haematologists to assess whether this approach could benefit UK myeloma patients.Details
The University of Oxford is looking for MGUS (monoclonal gammopathy of undetermined significance), smouldering myeloma and Waldenstrom’s macroglobulinemia patients to join the OxPLoreD study.Details
In collaboration with BMJ Learning, we have created a new course for GPs on myeloma. This interactive course gives practical tips on the detection and diagnosis of myeloma and MGUS.Details
We have partnered with GatewayC on their updated Myeloma Early Diagnosis course, available for all primary care professionals.
This course aims to increase GPs’ awareness of patients with suspected myeloma and support them to undertake the appropriate investigations and understand how to interpret the results.Details
In June, the first results from the OPTIMUM/MUK nine clinical trial were presented at international conferences.
The trial is the first to use state-of-the-art diagnostics and genetic profiling to screen for patients with high-risk myeloma.
These results show that treatment with a five-drug induction treatment (Dara-CVRd) and stem cell transplant is effective and well tolerated in ultra-high risk myeloma patient
Throughout 2021, the Patient Advocacy Team have been continuing their work to support patient access to new treatments on the NHS. Read more about the four active Health Technology Appraisals including the first-ever appraisal for an AL amyloidosis treatment.Details