Myelodysplastic Syndromes Registry (MDSLink)

Academic Lead:Professor Erica Wood
Head, Transfusion Research Unit
Clinical Lead: Associate Professor Melita Kenealy
Consultant Haematologist, Cabrini Hospital
Registry contact:Neil Waters, Deputy Director Operations, Transfusion Research Unit
Email: sphpm-mdsregistry@monash.edu
Phone: +61 3 9903 0407
Purpose / aims:

The aims of the MDS Registry are to:

  • describe the demographic, clinical and diagnostic features of newly diagnosed patients with myelodysplastic syndromes (MDS)
  • describe the therapeutic strategies utilised, including targeted and other pharmacological agents, and supportive care
  • investigate any correlation between patient outcomes and prognostic, clinical and therapeutic factors, and explore factors that influence outcomes, including survival and QoL
  • provide data on resource utilisation to inform health policy and planning
  • monitor access to care
  • benchmark outcomes nationally and internationally
  • monitor trends in incidence and survival
  • act as a resource for clinical trials
Population captured: Adult patients with a new diagnosis of MDS confirmed on bone marrow biopsy in Australia.
Outcomes collected: Diagnoses, laboratory and bone marrow biopsy results at diagnosis including cytogenetics and molecular studies if available, therapy decisions including pharmacological agents, transfusion practice and supportive therapy, and side effects of treatment, outcomes (overall and progression-free survival, duration of response and time to next treatment and quality of life measures – EORTC QLQ-C30, QUALMS), and long-term outcomes (through linkage with Cancer and Death Registries).
Funding sources: Bristol-Myers Squibb; patient bequest Austin Hospital
Year established: 2018 (pilot project)
Unit website:monash.edu/medicine/sphpm/units/transfusionresearch