Previously identified goals/questions (in no particular order)
Process measurement over time
- Monitor HP 2020 objective to increase the proportion of cancers screened
- How has the number screened/number of institutions doing universal screening changed since EGAPP?
- Measure identification of LS over time —-also prevalence/incidence
- Prevalence of LS mutation in patients with various cancer types – is screening appropriate?
- What is the estimated frequency of LS associated cancers?
- What is the penetrance of LS for various cancers?
- Collect data demonstrating cost effectiveness of LS screening, for institutional and state funding purposes (newborn screening model)
- Average number of family members identified via cascade screening?
- Provide data to Medicaid/Medicare in support of coverage
- What is the number of Medicaid/Medicare patients identified with LS?
- What family history is associated with mutation? (develop screening recommendations)
- Promote appropriate institutional and provider practices
- What proportion test mutation positive after screening positive under various screening protocols?
- What proportion of individuals identified with LS do not meet Bethesda or Amsterdam criteria?
- Data for educational purposes (not necessarily publication)