The Database Goals Surveillance of routine LS screening on newly diagnosed CRC (HP 2020) Data to answer questions regarding efficacy, efficiency, utility
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Transcript The Database Goals Surveillance of routine LS screening on newly diagnosed CRC (HP 2020) Data to answer questions regarding efficacy, efficiency, utility
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
Incentive for new institutions to initiate screening
Data to support mandate for insurance to cover LS
screening/GC/testing
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
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
Process
Key content elements proposed and discussed at
Sept 2011 meeting
Database subcommittee:
Lisen Axell
Cecelia Bellcross
Amie Blanco
Anu Chittenden
Linda Farkas
Greg Sundberg – programmer
Sarah Mange – data output expert
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
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