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:

• Provide guidance and a framework for design of future research and health care services
• Form a network of clinical experts from Australia and New Zealand with a special interest in myeloma and related diseases to regularly discuss findings from the registry

The Registry is an important first step to ensure that all patients with myeloma or MGUS will receive the best possible care.

MRDR Project Manager
T: 1800 811 326
E: sphpm.transfusion@monash.edu and sphpm-myeloma@monash.edu

How will patients participate?
Patients recently diagnosed with myeloma or MGUS will be identified by their clinician. The clinician will ask the patient to participate before their details are entered into the registry. Patients can request for their details to be removed from the registry at any time, even after their details have been entered, without any consequences for their treatment or care.

How to be a participating site:
Contact the research team at sphpm.transfusion@monash.edu

mrdr.net.au