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[SAMPLE] Hospital and Medical Center Cancer Genetics Data Report [year(s) of data reported] on Potential Lynch Syndrome-Related Cancers

This report prepared by [] provides information on the number of patients at your facility who may be at risk for Lynch syndrome (LS), also called Hereditary Non-Polyposis Colorectal Cancer (HNPCC), based on data that were reported to the central cancer registry from your institution during the time period mm/yyyy to mm/yyyy. All patients with colorectal cancer should be considered for tumor screening for Lynch syndrome.1 Some institutions test newly diagnosed endometrial cancers, especially those in women younger than 50.1

How many patients† were identified at [reporting institution] and statewide?

Number of cancers diagnosed during [Timeframe] in [Location] patients who could have Lynch syndrome (also called Hereditary Nonpolyposis Colorectal Cancer)
Cancer Site Sample (Facility specific)† Entire State
Colon or Rectum  (All Ages) # of cases # of cases
Endometrium (< Age 50) # of cases # of cases

Source: [insert data source]

Patient names associated with the reported diagnoses can be sent to a designated person in your facility upon request. If requested, the names will be disclosed to your facility using current confidentiality rules.

What is Lynch syndrome?

Lynch syndrome is a genetic condition that significantly increases an individual’s risk for colorectal, endometrial, and other cancers.

What are the benefits of identifying individuals with Lynch syndrome?

Identifying patients with Lynch syndrome is important because steps can be taken to detect cancer earlier if it develops and reduce cancer risks in the future for patients and their relatives. Patients with Lynch syndrome have a higher risk for developing future cancers and can benefit from closer monitoring or special medical management. Family members of these patients might have Lynch syndrome and should consider genetic counseling and testing for the same mutation identified in the patient.

How can cancer registry data help identify individuals with Lynch syndrome?

Patients with colorectal cancer at any age or with endometrial cancer (especially before age 50) are more likely to have Lynch syndrome and can be readily identified from cancer registry data.

Colorectal cancer tumor tissue can be screened for Lynch syndrome using immunohistochemical (IHC) and/or microsatellite instability (MSI) screening. Patients with tumors that screen positive may require further testing to diagnose Lynch syndrome. These patients should be referred to a health care provider trained in cancer genetics to discuss genetic testing to identify their specific Lynch syndrome mutation. Some institutions may decide to test newly diagnosed endometrial cancers, especially those in women younger than 50.

Reference
  1. Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group. 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 2009; 11:35-41.
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  • Page last reviewed: January 12, 2016
  • Page last updated: January 12, 2016
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