Database Elements

The LSSN database is fully HIPPA compliant. No personal identifying information is collected on the proband or family members.

Demographics

  • Age at Diagnosis
  • Sex
  • Race/Ethnicity
  • Insurance Coverage

Previous or Synchronous Lynch Syndrome-related cancer(s)

  • Age at Diagnosis
  • Cancer Type

Index Cancer

  • Type – colon, rectum, endometrial, other (specified)
  • Date of diagnosis
  • Specimen type (e.g. biopsy, resection – total colectomy, hysterectomy – lower uterine segment)
  • TNM Staging
  • Pathological Features

Tumor Screening

  • MSI testing/results
  • IHC testing/results
  • BRAF testing/results
  • MLH1 promoter methylation testing/results

Genetic Counseling/Testing

  • Genetic Counseling completed
  • Family History (minimal to detailed)
  • Previous Lynch Syndrome identified (proband or family member)
  • Genetic Testing Performed
  • If no – reason
  • If yes
    • Results (gene and mutation)
    • If deleterious mutation – Family members tested (relationship, pos/neg)
    • If negative or VUS – surveillance recommendations for 1st degree relatives

 

If more detailed information is required, please contact the LSSN Board of Directors