Data

Myeloma and Related Diseases Registry

Monash University

Dataset 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.
Click to explore relationships graph

Subjects

Health surveillance |

Source Study

Trial acronym

MRDR

Trial ID

ACTRN12618000659202

Purpose

Not available

Phase

Not Applicable

Funding

Commercial sector/Industry,Janssen-Cilag Pty Limited

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: 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.

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.

Study Protocol: Study protocol
Data Dictionary: Not Available

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.

Source study information is derived from the Australian New Zealand Clinical Trials Registry (ANZCTR). For more information on the ANZCTR, please see anzctr.org.au