Myelodysplastic Syndromes Registry (MDS)

Registry custodian:Associate Professor Erica Wood
Head, Transfusion Research Unit
Registry contact: Kelly Burns, Project Officer
Email: sphpm-mdsregistry@monash.edu
Phone: 1800 811 326
Clinical lead: Associate Professor Melita Kenealy
Haematologist
Purpose / aims:

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
Population captured:Patients with a myelodysplastic syndrome in Australia
Outcomes collected:Demographics, diagnoses, health states at diagnosis, laboratory results, therapy; including active and supportive treatments, complications of disease and therapy, and clinical outcomes (include mortality, disease progression, best clinical response to therapy and quality of life).
Funding source: Austin Health, Victoria
Industry partners