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Dec 10, 2023 •421 likes •592 views

New Concept/Proposals REDCap Rare Tumour Database A new data base for rare tumour data entry by doctors / hospitals Aim: to collect identical datasets with similar consent (proforma) (phase 1) so that data can be shared internationally once

  1. New Concept/Proposals REDCap Rare Tumour Database A new data base for rare tumour data entry by doctors / hospitals Aim: to collect identical datasets with similar consent (proforma) (phase 1) so that data can be shared internationally once portal / ethics issues addressed (phase 2) REDCap platform – easily accessible online, academic, one license per country required We welcome beta-testers!

  2. New Concept/Proposals REDCap Rare Tumour Database Not all groups have data collection capability across all rare gynae cancer types After discussion at both GCIG and IRCI over some years, recommendation was to use REDCap (academic online) platform – access via the internet (easy) Some reduction in functionality but accessible to all Each site/country wanting to collect their own data would need to pay for one license to REDCap (most universities have a license) – the database is free Data entry would need to be local – data kept on site until approval to share Data could then be shared globally as data collected would be identical TRICEPS (Treat Rare Collect data and Share) – discussions/planning with the NCI Genomic Data Commons (GDC) as portal for sharing – all data owners would choose when they are happy to share via GDC portal – BUT THEY COULD!!!

  3. New Concept/Proposals REDCap Rare Tumour Database Database designed and built in collaboration with COSA Rare Cancer Group and BioGrid Australia (NFP data sharing entity in Australia) Home of CART-WHEEL.org – new online consent available vehicle for data collection for individual studies eg the Whymsical study (World Federation of Waldenstrom’s Macroglobulinemia – graphing function)

  4. New Concept/Proposals REDCap Rare Tumour Database Design – generic to suit all tumour types (not just gynae) Drop-downs where-ever possible Focus on histologic diagnosis, molecular features and treatments received Calculate treatment-free intervals as surrogate for responses Aim to be able to generated annotated stacked swimmers plots to underpin drug approvals for rare indications – or phase 2 expansion studies Forms being tested in Australia: WEHI rare cancer program; On-line beta testing to begin in next 2-3 months (BioGrid process) Other COSA rare cancer group members; ANZGOG international testers welcome!!!! – only in English so far … .

  5. New Concept/Proposals REDCap Rare Tumour Database Annotated Stacked Swimmers Plot Tumour type / Histologic / molecular annotations * Olga Kondrashova, Gwo Ho, WEHI

  6. New Concept/Proposals REDCap Rare Tumour Database Patient consent: Standard pro-forma PICF available All sites to consider ensuring similar wording in their PICF Some hospitals already have a general consent We will provide our PICF with the database and recommend similar phrases be used to ensure can be shared in the future (phase 2) Database Maintenance: Easy to update lists eg genetics / markers / treatments We will continue to make the update version available to sites free of charge (I have 5 years funding for my site and as BioGrid is NFP, we will share)

  7. New Concept/Proposals REDCap Rare Tumour Database

  16. New Concept/Proposals REDCap Rare Tumour Database Contact me (Dr Damien Kee) if you would like to beta-test it: Clare Scott scottc@wehi.edu.au Damien Kee kee.d@wehi.edu.au Provide feedback re database design to date This will also be shared via IRCI – International Rare Cancer Initiative

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