The Prospective Lynch Syndrome Database


Who may participate: All who can provide information as described below are invited to join.
» Contact: plsd@ehtg.org

Objective: Compiling existing information on carriers with pathogenic mismatch repair gene variants (path_MMR variants) associated with dominantly inherited cancer.

Aim: Describing associations between the path_MMR variants and cancer in any organ by age, gene and gender, and effects of interventions.

Legal, ethics and data use agreement: Each provider of information should have local legal and ethical permission to hold and contribute information to PLSD, as specified in the data use agreement (DUA) below. Each contributor may add additional restrictions, if agreed.

Minimum dataset required: The database is a relational database. All data are to be de-identified or anonymized and identified by an alias (ID) by the contributor. Each contributor will be given an ID by the database curator.

The minimum requirement for participation is populating Tables A, B and D with complete information on all known carriers of path_MMR variants associated with autosomal dominant inheritance of cancer at the reporting centre until a censoring date set by the contributor.

Parent table A

  • Name of contributor as at contributor’s wish.
  • Alias for each carrier
  • Gene and variant of the gene.
  • Inclusion age for each carrier reported is age at first planned and carried out prospective colonoscopy based on assumed increased risk for cancer.
  • Age at last examination which must be at least one year after inclusion.
  • Age at death if died.

Table B
  • Age any (new primary) cancer diagnosed before, at, or after inclusion. One row for each cancer

Table D
  • Age at hysterectomy and or oophorectomy. One row for each procedure.


Data format: Excel workbook 97-2003. Template below.

Additional information not obligatory: Information on polyps as specified in templates for tables C and C2, and information on colorectal cancers in additional columns in extended table B, templates below.

Members
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