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

• This slide set is intended to be a resource for state health departments to use when presenting to hospitals and other institutions. States are welcome to select and modify slides to use and are not expected to use the entire set in a single presentation.
• 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.

Reporting Tools

• 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 tools and information on LS Tier 1

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
		2%	3%	4%
Alabama	2,333	47	70	93
Alaska	277	<10	<10	11
Arizona	2,332	47	70	93
Arkansascd	1,400	28	42	56
California	14,445	289	433	578
Colorado	1,683	34	50	67
Connecticut	1,724	34	52	69
Delaware	434	<10	13	17
District of Columbia	264	<10	<10	11
Florida	8,995	180	270	360
Georgia	3,748	75	112	150
Hawaii	733	15	22	29
Idaho	551	11	17	22
Illinois	6,255	125	188	250
Indiana	2,958	59	89	118
Iowa	1,689	34	51	68
Kansas	1,318	26	40	53
Kentucky	2,419	48	73	97
Louisiana	2,408	48	72	96
Maine	666	13	20	27
Maryland	2,282	46	68	91
Massachusetts	2,785	56	84	111
Michigan	4,494	90	135	180
Minnesotac
Mississippi	1,619	32	49	65
Missouri	2,897	58	87	116
Montana	519	10	16	21
Nebraska	905	18	27	36
Nevada	1,059	21	32	42
New Hampshire	511	10	15	20
New Jersey	4,177	84	125	167
New Mexico	802	16	24	32
New York	9,311	186	279	372
North Carolina	3,949	79	118	158
North Dakota	353	<10	11	14
Ohio	5,235	105	157	209
Oklahoma	1,702	34	51	68
Oregon	1,612	32	48	64
Pennsylvania	6,866	137	206	275
Rhode Island	498	10	15	20
South Carolina	2,024	40	61	81
South Dakota	458	<10	14	18
Tennessee	2,980	60	89	119
Texas	8,959	179	269	358
Utah	691	14	21	28
Vermont	278	<10	<10	11
Virginia	3,065	61	92	123
Washington	2,651	53	80	106
West Virginia	1,036	21	31	41
Wisconsin	2,387	48	72	95
Wyoming	260	<10	<10	10

^a– Colon and Rectum. Invasive Cancer Incidence Counts by State, United States – 2010

^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.

1. 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/.
2. 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: Making Universal Screening for Lynch Syndrome a Reality: The Lynch Syndrome Screening Network

CDC Blog: What Gets Measured Gets Done: Genomics, Surveillance Indicators and Healthy People 2020

CDC Blog: From Genetic Counseling in Individuals to Cascade Screening in Populations: An Emerging Role for Public Health Practice

CDC Blog: New Strategies for Public Health Genomics Beyond Newborn Screening

CDC Blog: Evidence Matters in Genomic Medicine—Round 3: Integrating Family Health History into Clinical Preventive Services

CDC Blog: Evidence Matters in Genomic Medicine

CDC Blog: Peeling the Pyramid, Scaling the Onion—How to Implement Genomic Medicine

CDC Public Health Genomics implementation page

Video produced in partnership with CDC: Cascade Genetic Screening and Public Health Practice: An Idea Whose Time Has Come

CDC Classification of Genomic Applications by Levels of Evidence

Public health action in genomics is needed now beyond newborn screening. By S Bowen et al. Public Health Genomics 2012

Implementing screening for Lynch syndrome among patients with newly diagnosed colorectal cancer: summary of a public health/clinical collaborative meeting. Bellcross et al. Genet Med 2012

Current priorities for public health practice in addressing the role of human genomics in improving population health. Khoury MJ et al. Am J Prev Med 2011

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