Impact of a cancer registry-based genealogy service to support clinical genetics services

Familial Cancer
David H BrewsterScottish Clinical Geneticists

Abstract

In collaboration with the network of genetics clinics in Scotland, a brief questionnaire was designed to gather data prospectively about the impact of information arising from pedigree research provided by Scottish Cancer Registry personnel. Pedigree research in Scotland is facilitated by access to public records of births, deaths, marriages, and historic census returns up to 1901, and enables the construction of accurate and extensive family pedigrees encompassing generations beyond the detailed knowledge of the proband. Subject to existing confidentiality guidelines, linkage of these pedigrees to cancer registration records results in a more comprehensive family history including the age at diagnosis of any cancer, multiple primary cancers, and cancers unreported from death certificates. Of 454 requests for pedigree research completed between 1 April 2002 and 31 March 2003, questionnaires were returned for 425 (94%). The information fed back to genetics clinics led to changes in family history, risk categorisation, and management in 41%, 30%, and 23% of cases, respectively. Management advice altered in both directions, that is, to institute active follow-up and surveillance of clinic attendees and their relatives where none w...Continue Reading

Citations

Jul 19, 2012·Journal of Community Genetics·Vigdis StefansdottirJon J Jonsson
Apr 7, 2005·The Lancet Oncology·David H BrewsterHans H Storm
Oct 19, 2006·British Journal of Cancer·D YoungM Steel
Jun 16, 2005·European Journal of Human Genetics : EJHG·Vanessa TempestJohn Steward

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