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

David H. Brewster; Alison Fordyce; Roger J. Black

doi:10.1023/B:FAME.0000039865.29247.75

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

, David H. Brewster (Lead / Corresponding author)
, Alison Fordyce
, Roger J. Black

Research output: Contribution to journal › Article › peer-review

11 Citations (Scopus)

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 was previously envisaged, and viceversa. The interests of current and future generations of patients concerned about their familial risk of cancer will be served by measures which enable cancer registries to collect data that are as accurate and complete as possible.

Original language	English
Pages (from-to)	139-141
Number of pages	3
Journal	Familial Cancer
Volume	3
Issue number	2
DOIs	https://doi.org/10.1023/B:FAME.0000039865.29247.75
Publication status	Published - Jun 2004

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

Cancer registration
Clinical genetics
Genealogy
Genetic counselling
Pedigree research

ASJC Scopus subject areas

Genetics
Oncology
Genetics(clinical)
Cancer Research

Access to Document

10.1023/B:FAME.0000039865.29247.75

Cite this

@article{484f5fa43c4840e492f8b170f642ebbb,

title = "Impact of a cancer registry-based genealogy service to support clinical genetics services",

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 was previously envisaged, and viceversa. The interests of current and future generations of patients concerned about their familial risk of cancer will be served by measures which enable cancer registries to collect data that are as accurate and complete as possible.",

keywords = "Cancer registration, Clinical genetics, Genealogy, Genetic counselling, Pedigree research",

author = "Brewster, \{David H.\} and Alison Fordyce and Black, \{Roger J.\} and Nicola Bradshaw and Joyce Campbell and Roseanne Cetnarskyj and Rosemarie Davidson and Sarah Drummond and Sixto Garcia and Barbara Gibbons and David Goudie and Helen Gregory and Neva Haites and Louise Irvine and Sheila Joss and Keng, \{Wee Teik\} and Elaine Kirk and Mark Longmuir and Lorna McLeish and Heather Malloch and Zosia Miedzybrodzka and Victoria Murday and Pauline Pearson and Mary Porteous and Sheila Simpson and Sheila Slater and Lesley Snadden and \{Michael Steel\}, C. and Diane Stirling and Aileen Timmons and Catherine Watt and Margo Whiteford and Catriona Whyte and Dorothy Young",

year = "2004",

month = jun,

doi = "10.1023/B:FAME.0000039865.29247.75",

language = "English",

volume = "3",

pages = "139--141",

journal = "Familial Cancer",

issn = "1389-9600",

publisher = "Springer Science and Business Media B.V.",

number = "2",

}

TY - JOUR

T1 - Impact of a cancer registry-based genealogy service to support clinical genetics services

AU - Brewster, David H.

AU - Fordyce, Alison

AU - Black, Roger J.

AU - Bradshaw, Nicola

AU - Campbell, Joyce

AU - Cetnarskyj, Roseanne

AU - Davidson, Rosemarie

AU - Drummond, Sarah

AU - Garcia, Sixto

AU - Gibbons, Barbara

AU - Goudie, David

AU - Gregory, Helen

AU - Haites, Neva

AU - Irvine, Louise

AU - Joss, Sheila

AU - Keng, Wee Teik

AU - Kirk, Elaine

AU - Longmuir, Mark

AU - McLeish, Lorna

AU - Malloch, Heather

AU - Miedzybrodzka, Zosia

AU - Murday, Victoria

AU - Pearson, Pauline

AU - Porteous, Mary

AU - Simpson, Sheila

AU - Slater, Sheila

AU - Snadden, Lesley

AU - Michael Steel, C.

AU - Stirling, Diane

AU - Timmons, Aileen

AU - Watt, Catherine

AU - Whiteford, Margo

AU - Whyte, Catriona

AU - Young, Dorothy

PY - 2004/6

Y1 - 2004/6

N2 - 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 was previously envisaged, and viceversa. The interests of current and future generations of patients concerned about their familial risk of cancer will be served by measures which enable cancer registries to collect data that are as accurate and complete as possible.

AB - 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 was previously envisaged, and viceversa. The interests of current and future generations of patients concerned about their familial risk of cancer will be served by measures which enable cancer registries to collect data that are as accurate and complete as possible.

KW - Cancer registration

KW - Clinical genetics

KW - Genealogy

KW - Genetic counselling

KW - Pedigree research

UR - https://www.scopus.com/pages/publications/16244397635

U2 - 10.1023/B:FAME.0000039865.29247.75

DO - 10.1023/B:FAME.0000039865.29247.75

M3 - Article

C2 - 15340265

AN - SCOPUS:16244397635

SN - 1389-9600

VL - 3

SP - 139

EP - 141

JO - Familial Cancer

JF - Familial Cancer

IS - 2

ER -

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

Abstract

UN SDGs

Keywords

ASJC Scopus subject areas

Access to Document

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