title: Increasing Lynch syndrome identification through establishment of a hereditary colorectal cancer registry.
abstract: BACKGROUND
  Lynch syndrome contributes to 5% of all colorectal cancers. Patients seen in most surgical clinics have limited or no family histories documented and are rarely assessed for hereditary syndromes. In 2007 a clinic-based hereditary colorectal cancer registry was established to screen for Lynch syndrome and facilitate genetic counseling/testing.
  
  
  OBJECTIVE
  To evaluate the effectiveness of the hereditary colorectal cancer registry to identify high-risk colorectal cancer patients and have them referred for genetic counseling/testing for Lynch syndrome.
  
  
  METHODS
  A retrospective review and cohort comparison of both prospectively collected and retrospective data.
  
  
  METHODS
  The colorectal surgical clinic at Vanderbilt University Medical Center.
  
  
  METHODS
  All newly diagnosed colorectal cancer patients seen between January 2006 and October 2010.
  
  
  METHODS
  To assess the identification of colorectal cancer patients at high risk for Lynch syndrome and for the occurrence of genetic counseling/testing before and after the establishment of a hereditary registry by comparing the results from the colorectal cancer patients seen the year prior to the establishment of the registry (January - December 2006, "control period") with those patients seen after initiation of the registry (January 2007 - October 2010, "registry period").
  
  
  RESULTS
  During the "registry period," 495 colorectal cancer patients were seen in the clinic and 257 (51.9%) were high risk for Lynch syndrome. Forty-nine patients (9.8%) underwent genetic testing, with 27 (5.4%) positive for a gene mutation, of which half were >50 years old. By comparison, in 2006, 115 colorectal cancer patients were seen in the clinic but only 4 patients (3.5%) went on for further assessment, and only 1 had genetic testing. Retrospective assessment showed that at least 22 patients (19.1%) had warranted further investigation in 2006.
  
  
  CONCLUSIONS
  This was a single-institution, retrospective review.
  
  
  CONCLUSIONS
  Establishment of a hereditary colorectal cancer registry with a clinic-based protocol improves identification of Lynch syndrome.
authors: Division of General Surgery, Vanderbilt University Medical Center, Nashville, TN 37232-2543, USA. Duveen.sturgeon@vanderbilt.ed
authors: Duveen
authors: D
authors: Sturgeon
authors: Tonna
authors: T
authors: McCutcheon
authors: Timothy M
authors: TM
authors: Geiger
authors: Roberta L
authors: RL
authors: Muldoon
authors: Alan J
authors: AJ
authors: Herline
authors: Paul E
authors: PE
authors: Wise
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000453:epidemiology / Q000235:genetics; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D012042:Registries; D012189:Retrospective Studies; D018570:Risk Assessment / Q000379:methods*