Advertisement

Journal of Genetic Counseling

, Volume 24, Issue 3, pp 421–427 | Cite as

Creation of a Network to Promote Universal Screening for Lynch Syndrome: The Lynch Syndrome Screening Network

  • Sarah MangeEmail author
  • Cecelia Bellcross
  • Deborah Cragun
  • Deb Duquette
  • Lisa Gorman
  • Heather Hampel
  • Kory Jasperson
PROFESSIONAL ISSUES
First Online:

Abstract

The Evaluation of Genomic Applications in Practice and Prevention Working Group published an evidence-based recommendation stating that every newly diagnosed colorectal cancer (CRC) should undergo tumor screening for Lynch syndrome (LS). In 2011, leading cancer institutions and public health agencies created the Lynch Syndrome Screening Network (LSSN) in order to promote routine LS screening on all newly diagnosed CRCs and endometrial cancers (EC). The LSSN facilitates implementation of appropriate screening via shared resources, protocols and data through network collaboration. The LSSN website contains resources for institutions interested in initiating screening, including materials for program development, implementation and sustainability. The LSSN listserv gives providers access to experts in LS screening and implementation. The LSSN database will allow exploration of key gaps in implementation as a consortia-wide endeavor. To date, the LSSN’s membership includes 85 institutions involved in the care of CRC patients and nine official partners such as national and state public health entities and other non-profit institutions. Nearly 80 % of the LSSN’s members have already implemented routine or universal CRC and/or EC screening. LSSN serves to further the population health potential of universal LS screening through collaborative efforts and resources.

Keywords

Lynch syndrome Universal screening Colon cancer Endometrial cancer Genetic testing Genetic counseling 
This is a preview of subscription content, log in to check access.

Notes

Acknowledgments

Support for logistical needs of the LSSN has been provided in part by the NCI’s Epidemiology and Genomics Research Program (EGRP) in the Division of Cancer Control and Population Sciences (DCCPS). Support for Deborah Cragun’s work was provided by an NCI training grant to Moffitt Cancer Center (R25T 5R25CA147832-04).

Conflict of Interest

Sarah Mange, Cecelia Bellcross, Deborah Cragun, Deb Duquette, Lisa Gorman, Heather Hampel, Kory Jasperson declare that they have no conflict of interest.

References

  1. Barrow, E., Alduaij, W., Robinson, L., Shenton, A., Clancy, T., Lalloo, F., et al. (2008). Colorectal cancer in HNPCC: cumulative lifetime incidence, survival and tumour distribution. A report of 121 families with proven mutations. Clinical Genetics, 74, 233–242.CrossRefGoogle Scholar
  2. Beamer, L. C., Grant, M. L., Espenschied, C. R., Blazer, K. R., Hampel, H. L., Weitzel, J. N., et al. (2012). Reflex immunohistochemistry and microsatellite instability testing of colorectal tumors for Lynch syndrome among US cancer programs and follow-up of abnormal results. Journal of Clinical Oncology, 30, 1058–1063.CrossRefGoogle Scholar
  3. Bellcross, C. A., Bedrosian, S. R., Daniels, E., Duquette, D., Hampel, H., Jasperson, K., et al. (2012). Implementing screening for Lynch syndrome among patients with newly diagnosed colorectal cancer: summary of a public health/clinical collaborative meeting. Genetics in Medicine, 14, 152–162.CrossRefGoogle Scholar
  4. Bonis, P. A., Trikalinos, T. A., Chung, M., Chew, P., Ip, S., DeVine, D. A., et al. (2007). Hereditary nonpolyposis colorectal cancer: diagnostic strategies and their implications. Evidence Report/Technology Assessment, 150, 1–180.Google Scholar
  5. Coates, R., Williams, M., Melillo, S., & Gudgeon, J. (2011). Genetic testing for lynch syndrome in individuals newly diagnosed with colorectal cancer to reduce morbidity and mortality from colorectal cancer in their relatives. PLOS Currents, 3, RRN1246.CrossRefGoogle Scholar
  6. Cohen, S. A. (2013). Current Lynch Syndrome Tumor Screening Practices: A Survey of Genetic Counselors. Journal of Genetic Counseling, Published online, 15 May 2013.Google Scholar
  7. Cragun, D., DeBate, R. D., Hampel, H., Vadaparampil, S. T., Baldwin, J., Pal, T. (2013). Comparing universal Lynch syndrome tumor screening programs to evaluate associations between implementation strategies and patient follow-through. Unpublished manuscript.Google Scholar
  8. Evaluation of Genomic Applications in Practice and Prevention [EGAPP]. (2009). Recommendations from the EGAPP working group: genetic testing strategies in newly diagnosed individuals with colorectal cancer aimed at reducing morbidity and mortality from Lynch syndrome in relatives. Genetics in Medicine, 11, 35–41.CrossRefGoogle Scholar
  9. Hampel, H., Frankel, W. L., Martin, E., Arnold, M., Khanduja, K., Kuebler, P., et al. (2005a). Screening for the Lynch syndrome (hereditary nonpolyposis colorectal cancer). New England Journal of Medicine, 352, 185–1860.CrossRefGoogle Scholar
  10. Hampel, H., Stephens, J. A., Pukkala, E., Sankila, R., Aaltonen, L. A., Mecklin, J. P., et al. (2005b). Cancer risk in hereditary nonpolyposis colorectal cancer syndrome: later age of onset. Gastroenterology, 129, 415–421.CrossRefGoogle Scholar
  11. Hampel, H., Frankel, W. L., Martin, E., Arnold, M., Khanduja, K., Kuebler, P., et al. (2008). Feasibility of screening for Lynch syndrome among patients with colorectal cancer. Journal of Clinical Oncology, 26, 5783–5788.CrossRefGoogle Scholar
  12. Healthypeople.gov (2013). Retrieved November 21, 2013, from http://www.healthypeople.gov/2020/topicsobjectives2020/objectiveslist.aspx?topicId=15.
  13. Howlader, N., Noone, A. M., Krapcho, M., Garshell, J., Neyman, N., Altekruse, S. F., et al. (April 2013). Estimated New Cancer Cases and Deaths for 2013. SEER Cancer Statistics Review, 1975–2010, National Cancer Institute. Retrieved December 2, 2013, from http://seer.cancer.gov/csr/1975_2010/.
  14. Järvinen, H. J., Aarnio, M., Mustonen, H., Aktan-Collan, K., Aaltonen, L. A., Peltomäki, P., et al. (2000). Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology, 118, 829–834.CrossRefGoogle Scholar
  15. Järvinen, H. J., Renkonen-Sinisalo, L., Aktan-Collan, K., Peltomäki, P., Aaltonen, L. A., & Mecklin, J. P. (2009). Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members. Journal of Clinical Oncology, 27, 4793–4797.CrossRefGoogle Scholar
  16. Kempers, M. J., Kuiper, R. P., Ockeloen, C. W., Chappuis, P. O., Hutter, P., Rahner, N., et al. (2011). Risk of colorectal and endometrial cancers in EPCAM deletion-positive Lynch syndrome: a cohort study. The Lancet Oncology, 12, 49–55.CrossRefGoogle Scholar
  17. Palomaki, G. E., McClain, M. R., Melillo, S., Hampel, H. L., & Thibodeau, S. N. (2009). EGAPP supplementary evidence review: DNA testing strategies aimed at reducing morbidity and mortality from Lynch syndrome. Genetics in Medicine, 11, 42–65.CrossRefGoogle Scholar
  18. Schmeler, K. M., Lynch, H. T., Chen, L. M., Munsell, M. F., Soliman, P. T., Clark, M. B., et al. (2006). Prophylactic surgery to reduce the risk of gynecologic cancers in the Lynch syndrome. New England Journal of Medicine, 354, 261–269.CrossRefGoogle Scholar
  19. Schmeler, K. M., Daniels, M. S., Soliman, P. T., Broaddus, R. R., Deavers, M. T., Vu, T. M., et al. (2010). Primary peritoneal cancer after bilateral salpingo-oophorectomy in two patients with Lynch syndrome. Obstetrics & Gynecology, 115, 432–434.CrossRefGoogle Scholar
  20. Stoffel, E., Mukherjee, B., Raymond, V. M., Tayob, N., Kastrinos, F., Sparr, J., et al. (2009). Calculation of risk of colorectal and endometrial cancer among patients with Lynch syndrome. Gastroenterology, 137, 1621–1627.CrossRefGoogle Scholar
  21. Umar, A., Boland, C. R., Terdiman, J. P., Syngal, S., de la Chapelle, A., Rüschoff, J., et al. (2004). Revised Bethesda guidelines for hereditary nonpolyposis colorectal cancer (Lynch syndrome) and microsatellite instability. Journal of the National Cancer Institute, 96, 261–268.CrossRefGoogle Scholar
  22. Vasen, H., Mecklin, J. P., Khan, P. M., & Lynch, H. T. (1991). The international collaborative group on hereditary non-polyposis colorectal cancer. Diseases of the Colon & Rectum, 34, 424–425.CrossRefGoogle Scholar
  23. Vasen, H., Watson, P., Mecklin, J. P., & Lynch, H. T. (1999). New clinical criteria for hereditary nonpolyposis colorectal cancer (HNPCC, Lynch syndrome) proposed by the international collaborative group on HNPCC. Gastroenterology, 116, 1453–1456.CrossRefGoogle Scholar
  24. Watson, P., Vasen, H. F., Mecklin, J. P., Bernstein, I., Aarnio, M., Järvinen, H. J., et al. (2008). The risk of extra-colonic, extra-endometrial cancer in the Lynch syndrome. International Journal of Cancer, 123, 444–449.CrossRefGoogle Scholar
  25. Weissman, S. M., Bellcross, C., Bittner, C. C., Freivogel, M. E., Haidle, J. L., Kaurah, P., et al. (2011). Genetic counseling considerations in the evaluation of families for Lynch syndrome–a review. Journal of Genetic Counseling, 20, 5–19.CrossRefGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2014

Authors and Affiliations

  • Sarah Mange
    • 1
    Email author
  • Cecelia Bellcross
    • 2
  • Deborah Cragun
    • 3
  • Deb Duquette
    • 1
  • Lisa Gorman
    • 4
  • Heather Hampel
    • 5
  • Kory Jasperson
    • 6
  1. 1.Lifecourse Epidemiology and Genomics DivisionMichigan Dept. of Community HealthLansingUSA
  2. 2.Human GeneticsEmory University School of MedicineAtlantaUSA
  3. 3.Department of Cancer Epidemiology, H. Lee Moffitt Cancer CenterTampaUSA
  4. 4.Michigan Public Health InstituteOkemosUSA
  5. 5.Division of Human Genetics, Department of Internal MedicineOhio State University Comprehensive Cancer CenterColumbusUSA
  6. 6.Huntsman Cancer InstituteUniversity of UtahSalt Lake CityUSA

Personalised recommendations

Cite article

Buy options