Lynch Syndrome tools
Tools for Bidirectional Cancer Registry Reporting to Identify Individuals at Risk for Lynch Syndrome
The following materials were developed to support state programs using bidirectional cancer registry reporting to identify individuals at risk for Lynch syndrome. State health departments are encouraged to customize the materials to meet their needs. Materials are categorized by those intended for patients and for healthcare providers, but materials may be suitable for multiple audiences. Please note that some materials will need to be filled out with state-specific information, as noted below.
Information for Patients
- Lynch Syndrome: A Guide for Patients and Their Families
- Brochure on Talking to Your Family About Your Diagnosis of Lynch Syndrome
- Sample Letter for Informing Your Family Members about Your Lynch Syndrome Mutation
- List of Cancer Genetic Specialists for Your State or Region (Please note that state programs will need to complete this form.)
- What You Need to Know About Cancer Registries: Frequently Asked Questions for Patients and Their Families
Information for Providers
- Lynch Syndrome: Fact Sheet for Healthcare Professionals
- Evidence-based Practice Guidelines Supporting Genetic Susceptibility Testing for Lynch Syndrome
- Bidirectional cancer registry reporting to identify patients at high risk for hereditary cancer syndromes: what providers and institutions need to know
Video for educational outreach to providers and institutions in states that have bidirectional cancer registry reporting programs in place.
- Sample Hospital and Medical Center Cancer Genetics Data Report on Potential Lynch Syndrome-Related Cancers (Please note that state programs will need to complete this form.)
CDC Medscape Expert Commentary on Genetic Testing for Lynch Syndrome in Colorectal Cancer
The LS State Burden of Disease Estimator Tool
Estimated number of persons with Lynch syndrome (LS) who could be identified by screening all persons with newly diagnosed invasive colorectal cancer (CRC)
|State||Incident cases invasive CRCa||Estimated numbers with LSb|
|District of Columbia||264||<10||<10||11|
b- Moreira L, et al. JAMA. 2012 Oct 17;308(15):1555-65.
Identification of Lynch syndrome among patients with colorectal cancer.
c-Minnesota and Arkansas cancer incidence data for 2010 are not available; 2009 data presented
d-Arkansas cancer incidence data are from 2009
Explanation of estimates
We estimated, by state, the number of persons with Lynch syndrome (LS) who could be identified by screening all persons with newly diagnosed invasive colorectal cancer (CRC). These estimates are based on the numbers of incident CRC cases reported by state cancer registries in 2010 (ref 1). To approximate the proportion of persons with CRC who could be expected to have LS, we used the estimate of 3% obtained by Moreira, et al, in a combined analysis of population-based studies in the U.S., Canada, Australia, and Europe (ref 2). To emphasize that this proportion is an imprecise approximation, we display estimates based on proportions of 2% and 4% for comparison.
Several factors that could influence these estimates have not been taken into account. These factors could include changes in state populations or CRC incidence since 2010; differences in LS prevalence among different racial and ethnic groups, which vary in their distribution among the states; and errors or uncertainty in the data used to calculate the estimates.
- U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2010 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2013. Available at: https://nccd.cdc.gov/uscs/.
- Moreira L, Balaguer F, Lindor N, et al. Identification of Lynch syndrome among patients with colorectal cancer. JAMA 2012;308:1555-65.
CDC Medscape Expert Commentary on a Tiered Approach to Integrating Genomics Into Your Practice
CDC Blog: Evidence Matters in Genomic Medicine
Video produced in partnership with CDC: Cascade Genetic Screening and Public Health Practice: An Idea Whose Time Has Come
- Page last reviewed: January 15, 2016
- Page last updated: June 13, 2016
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