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More Detailed Information on Key Tier 1 Applications- Lynch Syndrome


Lynch Syndrome tools and educational materials

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: www.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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