Myelodysplastic Syndromes Registry (MDSLink)

Academic Lead:Professor Erica Wood
Head, Transfusion Research Unit
Clinical Leads: Associate Professor Melita Kenealy, Cabrini Health
Dr Chun-Yew Fong, Austin Health
Associate Professor Zoe McQuilten, Deputy Head, Transfusion Research Unit
Registry Contact:Professor Erica Wood
Phone: 1800 811 326
Purpose / Aims:

The aims of the MDS Registry are to:

  • describe the demographic, clinical and diagnostic features of newly diagnosed MDS patients
  • 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: Patients with a new diagnosis of MDS confirmed on bone marrow biopsy. This will include new diagnosis within 12 months prior to HREC approval at the site, or cause of death listed as MDS within 12 months prior to HREC approval at the site.
Outcomes Collected: Health at diagnosis, demographic details. 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 Source: Celgene and a bequest through Austin Health. Also in-kind support from Monash University’s Department of Epidemiology and Preventive Medicine.