Myeloma and Related Diseases Registry
Monash UniversityDataset description
This observational study is collecting information from patients to form the Myeloma and Related Diseases Registry (MRDR)Who is it for?
You may be eligible for this study if you have a diagnosis of multiple myeloma, plasmacytoma, plasma cell leukaemia or monoclonal gammopathy of undetermined significance (MGUS).
Study details
Medical information including diagnostic tests, therapy and demographics will be provided by medical records. Participants can also provide information regarding their quality of life using a questionnaire.
It is hoped this registry will enable clinicians and hospitals to provide the best possible care to people with the included conditions and allow the evaluations of new therapies.
Date Information
Source Study
Trial name (public)
Purpose:
Phase:
Trial acronym
MRDR
Trial ID
ACTRN12618000659202
Funding
Commercial sector/Industry, Glaxo Smith Kline
Scientific enquiries
Dr Elizabeth Moore
Brief Summary
This observational study is collecting information from patients to form the Myeloma and Related Diseases Registry (MRDR) Who is it for? You may be eligible for this study if you have a diagnosis of multiple myeloma, plasmacytoma, plasma cell leukaemia or monoclonal gammopathy of undetermined significance (MGUS). Study details Medical information including diagnostic tests, therapy and demographics will be provided by medical records. Participants can also provide information regarding their qua .... Read more
Key Inclusion Criteria
Patients with a new diagnosis of multiple myeloma, plasmacytoma, plasma cell leukaemia or monoclonal gammopathy of undetermined significance (MGUS). Diagnosis within 3 months prior to HREC approval at a site for myeloma, plasmacytoma, plasma cell leukaemia and within 5 years for MGUS in order to minimise retrospective data collection.
Key Exclusion Criteria
People who decline to participate in the registry.
Can healthy volunteers participate?
No
Population
Sample Size 10000
Min. age 18 Years
Max. age No limit
Sex Both males and females
Condition category Monoclonal gammopathy of undetermined significance (MGUS) , Multiple Myeloma , Plasma cell leukaemia , Plasmacytoma
Condition code Blood , Cancer , Inflammatory and Immune System
Intervention
Intervention code Diagnosis / Prognosis
The Myeloma and Related Diseases Registry (MRDR) is an ongoing register of patients with a new diagnosis of multiple myeloma, plasmacytoma, plasma cell leukaemia or monoclonal gammopathy of undetermined significance (MGUS). The MRDR was established in 2012 in Australia and New Zealand. In 2018, the MRDR expanded to the Asia-pacific region and includes patients from Korea, Singapore, China/ Taiwan, and Malaysia.
Comparison
Control group Uncontrolled
No control group
Outcomes
Outcome: Progression-free post diagnosis in multiple myeloma which is assessed by review of hospital records and linkage with national death databases. Timepoint: 6 monthly reporting post-diagnosis for a minimum of 5 years.
Outcome: Overall survival post-diagnosis in multiple myeloma which is assessed by review of hospital records and linkage with national death databases. Timepoint: 6 monthly reporting post-diagnosis for a minimum of 5 years.
Will individual participant data (IPD) for this trial be available?
yes
What data in particular will be shared?
No directly identifying data will be shared. Health data collected during the study period, may be shared after de-identification, subject to relevant approvals.
When will data be available?
Data is available. No end date determined.
Available to whom?
Only researchers who provide a methodologically sound proposal and who have approval from relevant human research ethics committees, the MRDR management team and MRDR steering committee.
Available for what types of analyses?
Only to achieve aims related to those listed in the approved proposal.