About Us

What is multiple myeloma?

Multiple myeloma is a type of cancer that affects plasma cells, a type of white blood cell, in the bone marrow. It is one of the most common types of blood cancers.

What is a clinical registry?

Clinical registries collect medical and quality of life information from a group of patients. This data is then used by researchers to compare treatment patters, effectiveness of drug treatments, and overall patient outcomes. They can also allow treating institutions and clinicians to work towards higher quality care and treatments for all patients.

What is the Asia-Pacific Myeloma and Related Diseases Registry?

The Asia-Pacific Myeloma and Related Diseases Registry (APAC MRDR) is a clinical registry that collects health information on patients diagnosed with multiple myeloma or a related condition such as plasmacytoma, plasma cell leukaemia or monoclonal gammopathy of undetermined significance (MGUS) in the Asia Pacific.

The APAC MRDR was established in 2018 by Monash University and representatives from member countries with support from Janssen-Cilag. It is a sister registry to the Australian and New Zealand Myeloma and Related Diseases Registry (ANZ MRDR) which was established in 2012. Both the APAC MRDR and the ANZ MRDR are managed by Monash University’s School of Public Health and Preventive Medicine, through the Transfusion Research Unit.

The APAC MRDR aims to provide health care services and researchers an important resource for investigating the best possible treatment options for people with these conditions. The Registry will tell us about:

  • The usefulness and results of available treatments over time
  • The variety of care provided and how this compares to best practice internationally

The Registry will form a network of clinical experts from the Asia Pacific with a special interest in myeloma and its related diseases.

Why do we need this Registry?

Recent reports have shown that the number of new multiple myeloma cases is increasing in Asian countries, including Korea and Taiwan. The number of people living with myeloma is also expected to grow due to an aging population and better treatment options. Although treatment for myeloma is improving, it is a complex disease and there is still a lot unknown, including how to use available treatments in the most effective way.

This clinical registry aims to improve myeloma outcomes by providing an evidence base for the best strategies to diagnose, treat and support people with myeloma and related diseases.

Aims

Our aim is to generate information that will help improve the quality of care provided to patients with multiple myeloma or a related condition.

Specifically, we aim to:

    • Monitor trends in practice, outcomes and survival
    • Understand access to care
    • Explore variation in practice, process and outcomes
    • Benchmark outcomes internationally
    • Explore factors that influence outcomes including survival and quality of life
    • Act as a resource for clinical trials and further research
Participating Hospitals

So far, five countries/regions have been invited to participate including China, Korea, Malaysia, Singapore and Taiwan. Below are the hospitals that currently participate in the APAC MRDR.

*sites pending IRB/ethics approval

APAC MRDR Steering Committee

The APAC MRDR Steering Committee is comprised of the chief investigators, and clinical and epidemiological experts. They meet quarterly and oversee the following functions:

    • Monitor the scientific progress of the project including the data quality
    • Advise on the collection and interpretation of data
    • Assess and advise regarding performance outliers
    • Advise on scientific priorities to be addressed in data analysis and publication strategy
    • Review publications of the project and advise on their scientific quality
    • Review all research and external data requests