The MRDR provides an important resource for researchers investigating the causes and treatments for multiple myeloma and related diseases. It helps nurses and doctors provide the best possible care to people with these conditions. By participating in the MRDR, you will help to develop Australian and New Zealand data on the incidence and prevalence of myeloma, the therapies used, response to therapy and clinical outcomes. The analysis of this information obtained from the registry helps to evaluate treatments and guide choice of therapy, which could improve clinical outcomes in patients with myeloma. This binational registry is an important resource which will enable further investigation to help optimise the treatment of myeloma.
Access to data
MRDR sites can access their own data allowing them to establish their own database, monitor and evaluate local practice and identify areas with room for improvement. Six-monthly site reports provide analysis of demographic and diagnostic data, therapies and outcomes. A comparison of the site with overall registry data is provided as sites’ data matures, which allows benchmarking and the potential to improve quality of care.
Participation in data drives and substudies
MRDR sites can participate in data drives conducted intermittently, offering payment for complete data on targeted patients which allows some cost recuperation. Sites can also participate in the Myeloma 1000 project, a biobank substudy of the registry in which sites receive $150 for a one-off blood sample from newly diagnosed patients before treatment. There is no blood processing, nor extra data collection involved. The aim is to collect specimens from 1000 MM and 1000 MGUS pts which will allow assessment of biomarkers that predict treatment response, patients at risk of developing myeloma, and patients at risk of accelerated disease progression.
Networking and development of research potential
Participation in the MRDR provides increased opportunities for professional networking and research development through the annual breakfast group meetings, participation in multicentre studies, and the potential to develop your own supported research projects and analyses.
The research team host data management meetings twice a year and are available to provide help and guidance. In addition, sites can have access to MRDR presentations for their departments.
The MRDR receives requests for data and analyses, and collaborates in studies with sites, researchers, and students. The registry has been funded by Janssen to establish the APAC MRDR in Korea, Singapore and other countries in the Asia-Pacific region, and there are many more studies on the go and planned in areas including IVIG stewardship and active use of patient reported outcomes. As a participating site you contribute to vital research and improvement in care for patients with Myeloma and Related Diseases.
Videos on MRDR participation
Presented below are opinions and commentary on participation in the MRDR from the perspective of:
Professor Joy Ho - MRDR Principal Investigator, Royal Prince Alfred Hospital (RPAH)
Tracy King, MSc & PhD scholar - Myeloma Clinical Nurse Consultant & MRDR site co-ordinator, RPAH