Australian Myelodysplastic Syndromes (MDS) Patient Registry

Not Applicable

Recruiting

• Conditions: Myelodysplastic Syndromes; Cancer - Other cancer types; Blood - Haematological diseases

• Registration Number: ACTRN12620001012965
• Lead Sponsor: Monash University

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2020-10-07
• Last Update Posted: 4 April 2022

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 300

Inclusion Criteria

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.

Exclusion Criteria

Patients who have chosen to ‘opt-out’ of the Registry.

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Overall survival which is assessed by review of hospital records.<br>[For surviving patients, overall survival will be censored on the date the patient was last known to be alive as assessed at 5 years post-enrolment]

Secondary Outcome Measures

Name	Time	Method
duration of response to next treatment, which is assessed by review of hospital records.[6 monthly reviews up to 3 years];The EORTC QLQ-C30 is a measure of health-related quality of life in cancer patients and is collected at the same time then the QUALMS (Quality of Life in Myelodysplasia Scale) questionnaire.[6 monthly up to 3 years];The QUALMS (Quality of Life in Myelodysplasia Scale) questionnaire is a patient-reported outcome survey with a specific MDS focus in the modern treatment era, with a more specific focus on MDS.[6 monthly up to 3 years]