Database FAQs
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Why are you starting this database?
The Lynch Syndrome Screening Network was formed because of the Healthy People 2020 objective to increase the number of newly diagnosed colorectal cancer patients screened for Lynch Syndrome. Data supporting the public health potential of universal screening and research on the implementation of screening recommendations will provide critical information for the successful adoption of this recommendation nationwide.
What is the database going to be used for?
This database will be used for a number of things:
- To support insurance coverage of Lynch Syndrome screening, genetic counseling, and genetic testing.
- For surveillance of routine Lynch Syndrome screening on newly diagnosed colorectal cancers
- To provide data to support institution infrastructure and investment in Lynch Syndrome screening
- To collect data on screening of non-colorectal Lynch Syndrome cancers to support additional recommendations
- To collect information regarding test uptake by the proband and relatives
- To collect information regarding the clinical and family histories of individuals confirmed to have Lynch Syndrome by mutation analysis
What kind of information are you going to collect for this database?
- The database includes the elements of: patient demographic information,proband cancer history and pathology, tumor screening results, genetic counseling, genetic test results, family history and cascade testing of family members. Basic Data Elements
- Importantly, personal identifying information is not being collected as part of the LSSN database. The database does not contain names, addresses, dates of birth or social security numbers.
Why should my institution contribute to this database?
- Your institution’s contribution to this database will provide you a means of tracking your own screening data in a manner consistent with multiple other institutions performing screening across the country.
- By contributing to this database, your institution will have the opportunity to initiate and be involved in collaborative research projects utilizing LSSN data.
Will I have ready access to my own institution’s data?
All institutions contributing data will have ongoing access to their own data for internal clinical and research purposes.
How do I get access to the entire database for research purposes?
- Please contact the LSSN Board Of Directors (BOD) with your research inquiry.
- Contributing institutions may submit proposals for projects using aggregate data from the LSSN database. The LSSN BOD and a publications committee will review the merit and feasibility of submitted proposals. Approved projects are subject to LSSN’s data use and publications guidelines.
How do I gain access to the database to start imputing my data?
The LSSN will help you gain IRB approval, complete data use agreements, and set up a unique log-in for your institutions.
Who will be able to see the data that I input into the database?
- Each institution will be able to assign data entry, data export, and site administrator privileges for their own data.
- Other participating LSSN institutions will not have access to the data, except through the LSSN proposal and publication process; data disclosed through this process will not identify the contributing institution.
- Staff such as the website administrators and epidemiologists managing the database will have access to all data, and will be subject to IRB and LSSN rules regarding its use and disclosure.
How do I know this database is secure and will keep my data confidential?
- The data we propose to collect will be de-identified and meet all government, IRB, and HIPPA requirements.
- The database will be accessed through a secure portal.
What if my institution won’t allow me to put my data into the database? Can we still be a LSSN member?
- Yes. you can be an affiliate member. However, once the database is active, full membership will then require a current Lynch Syndrome screening protocol and a commitment of routine data entry.
- Full members will have access to the data through the LSSN approval process.