Transfusion Research Unit, Monash University, sphpm-myeloma@monash.edu
This prospective clinical quality 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. It is a registry of newly diagnosed patients with multiple myeloma, MGUS, plasma cell leukaemia or plasmacytoma. It collects information on demographics, diagnosis, treatment, response to therapy and outcomes including survival, progression free survival and quality of life.
The aims of the Myeloma & Related Diseases Registry are to:
- Monitor access to care
- Benchmark outcomes nationally and internationally
- Explore variation in practice, process and outcome measures
- Monitor trends in incidence and survival
- Explore the factors that influence outcomes including survival and quality of life
- Act as a resource for clinical trials
The MRDR has an industry-funded "sister registry", the Asia-Pacific MRDR (APAC MRDR), with the same aims and purpose. The APAC-MRDR collects data that mirrors the ANZ registry from Korea, Singapore, and Malaysia with other countries to follow.
- Feedback to contributing clinicians in six monthly site data reports
- Reported in Annual Report
- Shared with clinicians
- Shared with hospital executive
- Publish quarterly registry updates in MyeNews, published by Myeloma Australia, a national myeloma patient advocacy foundation
Collect EQ-5D-5L
Nil
https://www.mrdr.net.au/about-us/participating-sites/
Australian Capital Territory
- Canberra Hospital
Victoria
- The Alfred Hospital
- Peninsula Health (Frankston)
- Austin Hospital
- Northern Health (Northern Hospital)
- The Royal Melbourne Hospital
- Royal Melbourne /Peter Mac
- Monash Health (MMC)
- Cabrini - Malvern
- St Vincent's Hospital, Melbourne
- Eastern Health (Box Hill)
- Latrobe Regional Hospital
- Bairnsdale Regional Health Service
- Central Gippsland Health Service (Sale Hospital)
- Epworth Freemasons Hospital
- University Hospital Geelong
New South Wales
- Royal Prince Alfred Hospital
- St George Hospital
- Concord Repatriation General Hospital
- Lismore Hospital
- Royal North Shore Hospital
- Liverpool Hospital
- St Vincent's Hospital, Sydney
- Nepean Cancer Care
- Border Medical Oncology
- Jarrett St Specialist Centre
- ICON Cancer Care
Queensland
- Princess Alexandra Hospital
- Royal Brisbane and Women's Hospital
- Toowomba Hospital
- Townsville Hospital
Northern Territory
- Royal Darwin Hospital
Western Australia
- Sir Charles Gairdner Hospital
- Hollywood Private Hospital
South Australia
- Flinders Medical Centre
- Adelaide Cancer Centre
Tasmania
- Royal Hobart Hospital
- Launceston Hospital
New Zealand
- Middlemore Hospital
- Christchurch Hospital
- Dunedin Hospital
- Wellington Hospital
- Nelson Hospital
- Whangarei Hospital