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The Database

The Database. Goals. Surveillance of routine LS screening on newly diagnosed CRC (HP 2020) Data to answer questions regarding efficacy, efficiency, utility Incentive for institutions to collect data Data to support institution infrastructure investment

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The Database

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  1. The Database

  2. Goals • Surveillance of routine LS screening on newly diagnosed CRC (HP 2020) • Data to answer questions regarding efficacy, efficiency, utility • Incentive for institutions to collect data • Data to support institution infrastructure investment • Incentive for new institutions to initiate screening • Data to support mandate for insurance to cover LS screening/GC/testing

  3. Goals • Data on screening non-CRC LS cancers to support additional recommendations • Data regarding test uptake by proband and relatives in “real world” settings • Data regarding clinical and family history of mutation positive cases identified • Identify “index” cases for further data collection via collaborative research efforts

  4. How much do we need to include to answer key questions vs. • How much we’d like to include to answer all the questions we have

  5. Process • Key content elements proposed and discussed at Sept 2011 meeting • Database subcommittee: • LisenAxell • Cecelia Bellcross • Amie Blanco • AnuChittenden • Linda Farkas • Greg Sundberg – programmer • Sarah Mange – data output expert

  6. Logistics • Housed on MI Public Health Institute Server • Secured/HIPPA compliant • System administrators – LSSN Board • Approved sites: Location Managers – site administration: • access to own data at any time • generate reports on own data (use for internal tracking) • add in-system users/passwords and determine their access (data entry only, generate reports, etc.) • https://migrc.org/lynchscreening

  7. Next Steps • Need for some final database programming – looking for someone who might be able to do “pro bono” as funds exhausted • Complete manual • Volunteers to beta test with manual • IRB process • Pending RO3 – select data dump/entry assistance

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