The LSSN recognizes the the importance of tracking universal tumor screening outcomes as well as other areas of research that are in line with the LSSN vision and mission. As such, LSSN members have created a working list of research questions that will be answered in the future. Members are also working on creating guidelines and an application form for those interested in research collaboration. Once complete, this information will be added to the website.

Research Questions

Previously identified goals/questions (in no particular order)

Process measurement over time

1. Monitor HP 2020 objective to increase the proportion of cancers screened
2. How has the number screened/number of institutions doing universal screening changed since EGAPP?
3. Measure identification of LS over time —-also prevalence/incidence

Prevalence/Incidence

4. Prevalence of LS mutation in patients with various cancer types – is screening appropriate?
5. What is the estimated frequency of LS associated cancers?

Penetrance

6. What is the penetrance of LS for various cancers?

Cost effectiveness

7. Collect data demonstrating cost effectiveness of LS screening, for institutional and state funding purposes (newborn screening model)
8. Average number of family members identified via cascade screening?

Medicaid/Medicare coverage

9. Provide data to Medicaid/Medicare in support of coverage
10. What is the number of Medicaid/Medicare patients identified with LS?

Screening recommendations

11. What family history is associated with mutation? (develop screening recommendations)
12. Promote appropriate institutional and provider practices
13. What proportion test mutation positive after screening positive under various screening protocols?
14. What proportion of individuals identified with LS do not meet Bethesda or Amsterdam criteria?

Other

15. Data for educational purposes (not necessarily publication)