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:
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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