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Introduction to LaRDR
- Introduction of Professor Stephen Opat (chairman of LaRDR Steering Committee)
- Background and current coverage of the registry
- Governance of the registry managed by the Steering Committee
- Future direction in the continued collection of follow-up data for benchmarking and publication
Principal Investigator at Participating Site
- Introduction of Dr Kyle Crassini, Coffs Harbour Health Campus
- Previous experience with ICAN and RATIONALISE studies
- Role of a site principal investigator and process to propose research studies
- Importance for a regional site to participate in the registry for research and benchmarking
Clinical research coordinator at Participating Site
- Introduction of Dr Emma Petley, Epworth Healthcare
- Role of a site clinical research coordinator
- Data entry training and support received from LaRDR and clinicians
- Importance for a private site to participate in the registry for research and benchmarking
Research Placement Experience
- Introduction of Dr Simran Bhopal, research placement intern
- Designing and conducting a registry research study
- Abstract presentation at BLOOD 2022 (haematology conference)
- Research experience in a registry environment with support from LaRDR
Registry data management
- Introduction of Dr Fiona Chen (senior data officer at Transfusion Research Unit, Monash University),
- Challenges in managing registry data
- Process of data cleaning, auditing and extraction for research analyses
- Reporting registry data via a public-facing dashboard
Registry at Blood 2023
- Introduction of Ms Eliza Chung (senior research officer at Transfusion Research Unit, Monash University),
- Role and responsibility as a project manager,
- LaRDR’s involvement in research and publication in the conference,
- Networking and professional development opportunities at the conference.
Ensuring data quality for research
- Introduction of Dr Allison Barraclough, Principal Investigator at Fiona Stanley Hospital, member of the Data validation working group of LaRDR
- Experience in co-chairing the data managers meeting
- Using registry data in a collaborative study
- Recommendation for other early-career researchers to utilise the registry data
Data contribution to international partnership
- Introduction of Dr Nicholas Viiala (Principal Investigator at Liverpool Hospital)
- Experience in data contribution for a rare disease collaboration
- Value of using registry data for benchmarking site performance
- Upcoming project proposals using registry data