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

ProcessKey content elements proposed and discussed at

Sept 2011 meeting

Database subcommittee:Lisen AxellCecelia BellcrossAmie BlancoAnu ChittendenLinda 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 timegenerate 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