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 Email: sphpm-mdsregistry@monash.edu Phone: 1800 811 326 |
Purpose / Aims: | The aims of the MDS Registry are to:
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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. |
Unit Website: | monash.edu/medicine/sphpm/units/transfusionresearch |