title: Value of database linkage: are patients at risk of familial colorectal cancer being referred for genetic counselling and testing?
abstract: BACKGROUND
  Unique research opportunities are being created in an era of increasingly sophisticated data collection and data linkage. There are Familial Cancer Clinics (FCC) to counsel patients and families about risk reduction strategies and to carry out genetic testing where appropriate. There is currently no objective evidence as to whether appropriate patients are being referred to the FCC.
  
  
  METHODS
  Using a unique resource, the BIO21:MMIM informatics platform, we were able to link data from a prospective colorectal cancer (CRC) database at four Melbourne hospitals with the FCC database for the 4-year period from 2002 to 2005. We determined the number of patients that, on the basis of at least one risk factor suggestive of hereditary CRC, could have been considered for FCC referral, the number that was referred and the number that attended.
  
  
  RESULTS
  Of the 829 new diagnoses of CRC 228 (27.5%) would potentially have benefited from FCC referral. Of these, 50 persons (21.9%) were referred and 32 (14.0%) attended. The highest referral rates were in young, early-stage CRC patients with a family history and the lowest in late-stage and multiple-polyp patients. Patient sex, language and insurance status did not influence referral or attendance.
  
  
  CONCLUSIONS
  The database linkage capability provided by MMIM has enabled us to carry out a unique study. The results suggest that the rate of appropriate FCC referral is low, that certain subgroups are at particular risk of non-referral and that many referred patients do not ultimately attend. Interventions that increase referral rates and encourage attendance need to be considered.
authors.affiliation: Bio 21:MMIM Project, Melbourne, Victoria, Australia.
authors.forename: C
authors.initials: C
authors.lastname: Wong
authors.forename: P
authors.initials: P
authors.lastname: Gibbs
authors.forename: J
authors.initials: J
authors.lastname: Johns
authors.forename: I
authors.initials: I
authors.lastname: Jones
authors.forename: I
authors.initials: I
authors.lastname: Faragher
authors.forename: E
authors.initials: E
authors.lastname: Lynch
authors.forename: F
authors.initials: F
authors.lastname: Macrae
authors.forename: L
authors.initials: L
authors.lastname: Lipton
mesh_terms: D000328:Adult; D015179:Colorectal Neoplasms / Q000175:diagnosis / Q000235:genetics*; D030541:Databases, Genetic / Q000592:standards; D005260:Female; D005817:Genetic Counseling / Q000379:methods* / Q000592:standards; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods* / Q000592:standards; D006801:Humans; D008297:Male; D008875:Middle Aged; D012017:Referral and Consultation / Q000592:standards; D012307:Risk Factors