Myeloma and Related Diseases Registry
The Myeloma and Related Diseases Registry (MRDR) was established in 2012 at Monash University in Melbourne, Victoria. The MRDR is a bi-national (Australia and New Zealand) register of patients diagnosed with myeloma, plasmacytoma, plasma cell leukaemia and monoclonal gammopathy of undetermined significance (MGUS).
The MRDR collects data on patterns of treatment and variation in patient outcomes (both survival and quality of life). It will help clinicians and hospitals to provide the best possible care to people with these conditions and allow evaluation of the translation of advances in therapy (such as the introduction of new targeted therapies) into long-term outcomes, outside the setting of clinical trials.
Why do we need a Myeloma and Related Diseases Registry (MRDR)?
The information on the MRDR provides clinicians and researchers with an important resource for investigating the causes and treatments for myeloma and MGUS. Different centres currently manage patients with myeloma and MGUS in slightly different ways, and more information is needed about which treatments work best and how useful they are. Although we know roughly how many new cases of myeloma are diagnosed in Australia and New Zealand each year, we don’t know how severely patients are affected, precisely how they are treated or how their health changes over time.
The registry will tell us all of these things. It will also:
The Registry is an important first step to ensure that all patients with myeloma or MGUS will receive the best possible care.
|Registry Location||Australia and New Zealand|
|Adding New Patients to Registry||
How will patients participate?
How to be a participating site:
|Please see the website for more information|