Get involved

Benefits

Patient participation:

• Contribute to research that will improve outcomes for individuals with myeloma or a related disease in the future. Each patient who participates adds vital information that makes the MRDR more representative of myeloma and related diseases in Australia and New Zealand. 

Site participation: 

• Build your own database while contributing to the registry: MRDR sites can access their own grouped data to monitor and evaluate local practice and identify areas with room for improvement.
• Receive six-monthly site data reports: allows comparison of your grouped local data on diagnosis, treatment and outcomes with the rest of the registry and the potential to improve quality of care.
• Participate in registry-based studies: payment for patient enrolment can help sites fund MRDR data entry.
• Contribute to vital research and improvement in care for patients with myeloma and related diseases.

How to get involved?

Sites: We love hearing from sites about joining the registry; please send us an email: sphpm-myeloma@monash.edu . The MRDR can help with ethics and governance applications. Once approved, sites are provided with training and staff logins for data entry.

Patients: Ask your treating specialist if your hospital contributes data to the MRDR and if you are eligible to participate. If so, you will receive a patient information sheet about the registry including how to opt out if you change your mind. You can also contact us at: sphpm-myeloma@monash.edu 

Proposals: If you have a research proposal to use registry data we'd love to hear from you. Download the MRDR Data Access Policy (Word), complete the Data Request Form from page 6, and send in to: sphpm-myeloma@monash.edu 

Useful resources

MyeTxScheduler: The Myeloma Specialist Practice Network (M-SPN) of the Haematology Society of Australia and New Zealand (HSANZ) Nurses Group has developed MyeTxScheduler, a tool to help clinicians create treatment schedules to be printed and provided to patients to help them understand their myeloma treatment. It is pre-populated with standard myeloma treatment schedules based on eviQ protocols but with flexibility to adapt to individual patient needs. MyeTxScheduler is available on tablets and computers only and can be accessed through the following link to M-SPN: MyeTxScheduler

Patient privacy

Your privacy is extremely important. The MRDR has been designed in accordance with the strictest privacy principles, including State and Commonwealth privacy laws, and has been reviewed by independent ethics committees from hospitals around Australia and New Zealand. No identifying information about patients will be released to a third party (except in the very rare case of a court order) and hospitals will only be able to view the details of their own patients.

Videos on MRDR participation

Below are opinions and commentary on participation in the MRDR.