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 Clinical Quality Registry Stage 2 Research Stage 3 Registry trials

Step 1

• Establish a

CQI leadership group Step 2

• Conduct

literature review Step 3

• Identify

preliminary list of indicators Step 4

• Draft

indicators for the Delphi process

         The Data will be made FAIR Achieved:

• 1. Consensus
• 2. Collaboration
• 3. Good governance

Planned: 4. Efficient & sustainably resourced 5. Web based public registry 6. Fully accessible to authorised persons 7. Interoperable, standardised data 8. Standard usage rights

Search Results

Preliminary clinical indicators Identification Screening Eligibility Inclusion

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

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

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

Thank you to Australian Research Data Commons for the grant to support his work.