Prioritised clinical domain
High burden cancers
Abbreviation
MDSlink
Registry contact
Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu
Year established
2018
Description
The aims of the MDS Registry are to:
- Monitor access to care
- Benchmark outcomes nationally and internationally
- Explore variation in practice, process and outcomes
- Monitor trends in incidence and survival
- Explore the factors that influence outcomes including survival and quality of life
- Be a resource for clinical trials and further research – MDS Registry data on patterns of treatment and variation in patient outcomes allows evaluation of advances in therapy outside the setting of clinical trials, and will enable provision of the best possible care to people with MDS
Reporting process
- Feedback to contributing clinicians
Patient Reported Outcome Measures (PROMs)
Nil
Patient Reported Experience Measures (PREMs)
Nil
Participating sites
- Cabrini Hospital Melbourne
- Monash Health
- Austin Hospital
- Royal Adelaide Hospital
Condition
Myelodysplastic Syndrome
Name
Myelodysplastic Syndrome Registry
Lead organisation
Monash University
Ethics approval reference
Monash Health Human Research Ethics Committee Reference: HREC/18/MonH/341
Program area