and Adult Brain Cancer Clinical Registry Brain Cancer Biobanking - PowerPoint PPT Presentation

Towards the Development of Clinical Quality Indicators for a National Paediatric and Adult Brain Cancer Clinical Registry Brain Cancer Biobanking Australia (BCBA) Ms Robyn Leonard, BCBA Founder / Director A/Prof Lindy Jeffree, Neurosurgeon, Royal Brisbane and Women’s Hospital

National Brain Cancer Clinical Registry development Stage 1 Stage 2 Stage 3 Clinical Quality Research Registry trials Registry Step 1 Step 2 Step 3 Step 4 • Establish a • Conduct • Identify • Draft CQI literature preliminary indicators for leadership review list of the Delphi group indicators process          The Data will be made FAIR Planned: Achieved: 4. Efficient & sustainably resourced 1. Consensus 5. Web based public registry 2. Collaboration 6. Fully accessible to authorised persons 3. Good governance 7. Interoperable, standardised data 8. Standard usage rights

Search Results Preliminary Identification Screening Eligibility Inclusion clinical indicators Records excluded Recommendations Diagnosis (n=2978) Extracted (n=15) (n=712) Ineligible Database (n=27) Screened by search title/abstract Surgery (n=4552) (n=3071) Combine (n=12) records Duplicates Full text (n=70) Guidelines ‘Guidelines’ Radiotherapy identified 2015-2019 (n=7) (n=93) (n=51) Internet search Chemotherapy Quality Guidelines (n=3) (n=8) Appraisal included (n=24) (n=21) Other care Poor Additional (n=28) Quality Source (n=3) (n=1)

Lessons Learnt Collaboration and coverage ▪ Build on existing work (extensive existing literature) ▪ Expert guidance essential for interpretation Sustainability ▪ Specific content is evolving; work with principles ▪ Technical solutions (existing databases) reduce administrative burden ▪ Patient care motivates clinicians, organizations & funders Learnings ▪ Translation from clinical ideas to technical datapoints is onerous ▪ Iterative cycles of funding, clinical & technical progress are necessary Impact ▪ The National Registry will provide previously unavailable data to reduce unwarranted variation in care and improve outcomes for brain cancer patients.

Acknowledgements Thank you to Australian Research Data Commons for the grant to support his work. A/Prof Lindy Jeffree Prof Michael Besser Ms Robyn Leonard Prof John Zalcberg A/Prof Claire Vajdic Dr Craig Gedye A/Prof Hui Gan Dr Nick Gottardo Dr Misa Matsuyama Dr Mythily Sachchithananthan