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C. Gordon, I. Walpole, S. Zubrick, C. Bower (2003)
Population screening for cystic fibrosis: Knowledge and emotional consequences 18 months laterAmerican Journal of Medical Genetics Part A, 120A
C. Castellani, M. Macek, J. Cassiman, A. Duff, J. Massie, L. Kate, D. Barton, G. Cutting, B. Dallapiccola, E. Dequeker, E. Girodon, W. Grody, E. Highsmith, H. Kääriäinen, S. Kruip, M. Morris, P. Pignatti, Ulrike Pypops, M. Schwarz, M. Soller, M. Stuhrman, H. Cuppens (2010)
Benchmarks for cystic fibrosis carrier screening: a European consensus document.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 9 3
Z. Stark, J. Massie, B. McClaren, L. Ioannou, Nicole Cousens, S. Lewis, S. Metcalfe, M. Delatycki (2013)
Current Practice and Attitudes of Australian Obstetricians Toward Population-Based Carrier Screening for Inherited ConditionsTwin Research and Human Genetics, 16
Knowing your Genes -Cystic Fibrosis Carrier Screening
L. Ioannou, J. Massie, S. Lewis, V. Collins, B. McClaren, M. Delatycki (2013)
Attitudes and opinions of pregnant women who are not offered cystic fibrosis carrier screeningEuropean Journal of Human Genetics, 22
J. Massie, R. Forbes, D. Dusart, A. Bankier, M. Delatycki (2007)
Community‐wide screening for cystic fibrosis carriers could replace newborn screening for the diagnosis of cystic fibrosisJournal of Paediatrics and Child Health, 43
J. Bobadilla, M. Macek, J. Fine, P. Farrell (2002)
Cystic fibrosis: A worldwide analysis of CFTR mutations—correlation with incidence data and application to screeningHuman Mutation, 19
G. Turner (1998)
Carrier testing for cystic fibrosisMedical Journal of Australia, 168
P. Field, N. Martin (2011)
CFTR mutation screening in an assisted reproductive clinicAustralian and New Zealand Journal of Obstetrics and Gynaecology, 51
J. Massie, C. Castellani, W. Grody (2014)
Carrier screening for cystic fibrosis in the new era of medications that restore CFTR functionThe Lancet, 383
Susannah Maxwell, K. Brameld, L. Youngs, E. Geelhoed, P. O'Leary (2010)
Informing policy for the Australian context – Costs, outcomes and cost savings of prenatal carrier screening for cystic fibrosisAustralian and New Zealand Journal of Obstetrics and Gynaecology, 50
K. Barlow-Stewart, L. Burnett, A. Proos, V. Howell, F. Huq, R. Lazarus, H. Aizenberg (2003)
A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school studentsJournal of Medical Genetics, 40
R. Massie, J. Glazner, C. Robertson, M. Olsen, I. Francis (2000)
Newborn screening for cystic fibrosis in Victoria: 10 years' experience (1989‐1998)Medical Journal of Australia, 172
B. McClaren, M. Delatycki, V. Collins, S. Metcalfe, M. Aitken (2008)
‘It is not in my world’: an exploration of attitudes and influences associated with cystic fibrosis carrier screeningEuropean Journal of Human Genetics, 16
Jane Hall, D. Fiebig, Madeleine King, I. Hossain, J. Louviere (2006)
What influences participation in genetic carrier testing? Results from a discrete choice experiment.Journal of health economics, 25 3
S. Sawyer, B. Cerritelli, Lucy Carter, M. Cooke, J. Glazner, J. Massie (2006)
Changing Their Minds With Time: A Comparison of Hypothetical and Actual Reproductive Behaviors in Parents of Children With Cystic FibrosisPediatrics, 118
Louise Christie, A. Ingrey, Gillian Turner, A. Proos, G. Watts (2009)
Outcomes of a cystic fibrosis carrier testing clinic for couplesMedical Journal of Australia, 191
L. Ioannou, John Massie, Veronica Collins, B. McClaren, M. Delatycki (2010)
Population-Based Genetic Screening for Cystic Fibrosis: Attitudes and OutcomesPublic Health Genomics, 13
S. Grosse, W. Rogowski, L. Ross, M. Cornel, W. Dondorp, M. Khoury (2009)
Population Screening for Genetic Disorders in the 21st Century: Evidence, Economics, and EthicsPublic Health Genomics, 13
(2010)
Public policy on community-wide preconception and prenatal carrier screening for cystic fibrosis genotypes
L. Ioannou, John Massie, John Massie, S. Lewis, Vicki Petrou, A. Gason, S. Metcalfe, M. Aitken, Agnes Bankier, M. Delatycki (2010)
Evaluation of a multi‐disease carrier screening programme in Ashkenazi Jewish high schoolsClinical Genetics, 78
(2013)
Experiences of couples both identified as carriers of cystic fibrosis identified through a population-based carrier screening program. Poster presentation Human Genetics Society of Australasia
L. Ioannou, J. Massie, S. Lewis, B. McClaren, V. Collins, M. Delatycki (2014)
‘No thanks’—reasons why pregnant women declined an offer of cystic fibrosis carrier screeningJournal of Community Genetics, 5
M. Khoury, L. Mccabe, E. McCabe (2003)
Population screening in the age of genomic medicine.The New England journal of medicine, 348 1
A Statement from the The Royal Australian and New Zealand College of Obstetricians and Gynaecologists
R. Norman, Kees Gool, Jane Hall, M. Delatycki, J. Massie (2012)
Cost-effectiveness of carrier screening for cystic fibrosis in Australia.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 11 4
(2012)
Australian Cystic Fibrosis Data Registry Annual Report. Published by Cystic Fibrosis Australia
S. Wake, C. Rogers, P. Colley, Elizabeth Hieatt, Christine Jenner, G. Turner (1996)
Cystic fibrosis carrier screening in two New South Wales country towns.The Medical journal of Australia, 164 8
(2012)
Attitudes of adults with cystic fibrosis towards population-based cystic fibrosis carrier screening
Melanie Honnor, Melanie Honnor, S. Zubrick, S. Zubrick, I. Walpole, C. Bower, C. Bower, J. Goldblatt (2000)
Population screening for cystic fibrosis in Western Australia: community response.American journal of medical genetics, 93 3
J. Massie, M. Delatycki (2013)
Cystic fibrosis carrier screening.Paediatric respiratory reviews, 14 4
T. Dudding, B. Wilcken, B. Burgess, Judy Hambly, G. Turner (2000)
Reproductive decisions after neonatal screening identifies cystic fibrosisArchives of Disease in Childhood - Fetal and Neonatal Edition, 82
E. Warren, Robert Anderson, A. Proos, L. Burnett, K. Barlow-Stewart, Jane Hall (2005)
Cost-effectiveness of a school-based Tay-Sachs and cystic fibrosis genetic carrier screening programGenetics in Medicine, 7
(1999)
Genetic testing for cystic fibrosis. National Institutes of Health Consensus Development Conference Statement on genetic testing for cystic fibrosis.Archives of internal medicine, 159 14
T. Doksum, B. Bernhardt (1996)
Population-based carrier screening for cystic fibrosis.Clinical obstetrics and gynecology, 39 4
(2011)
Attitudes of adults with cystic fi brosis towards population - based cystic fi brosis carrier screening . Oral presentation Human Genetics Society of Australasia . Canberra
Fiona Cunningham, S. Lewis, L. Curnow, J. Glazner, J. Massie (2014)
Respiratory physicians and clinic coordinators' attitudes to population-based cystic fibrosis carrier screening.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 13 1
(1968)
Prinicipals and Practice of Screening for Disease. Geneva: World Health Organization
Susannah Maxwell, G. Kyne, C. Molster, N. Barker, J. Ormsby, P. O'Leary (2011)
Perceptions of population cystic fibrosis prenatal and preconception carrier screening among individuals with cystic fibrosis and their family members.Genetic testing and molecular biomarkers, 15 3
J. Massie, Vicki Petrou, R. Forbes, L. Curnow, L. Ioannou, D. Dusart, A. Bankier, M. Delatycki (2009)
Population‐based carrier screening for cystic fibrosis in Victoria: The first three years experienceAustralian and New Zealand Journal of Obstetrics and Gynaecology, 49
R. Massie, M. Delatycki, A. Bankier (2005)
Screening couples for cystic fibrosis carrier status: why are we waiting?Medical Journal of Australia, 183
M. Delatycki, J. Burke, Louise Christie, F. Collins, M. Gabbett, P. George, E. Haan, L. Ioannou, N. Martin, F. McKenzie, P. O'Leary, Nicole Scoble-Williams, G. Turner, J. Massie (2014)
Human Genetics Society of Australasia Position Statement: Population-Based Carrier Screening for Cystic FibrosisTwin Research and Human Genetics, 17
Royal Australian Community of General Practitioners. Guidelines for preventive activities in general practice, 8th edn
A. Gason, Edith Sheffield, A. Bankier, A. Bankier, M. Aitken, S. Metcalfe, K. Stewart, M. Delatycki (2003)
Evaluation of a Tay‐Sachs Disease screening programClinical Genetics, 63
Ja Wilson, G. Jungner (1968)
Principles and practice of screening for disease
Kees Gool, R. Norman, M. Delatycki, Jane Hall, J. Massie (2013)
Understanding the costs of care for cystic fibrosis: an analysis by age and health state.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 16 2
Dodge Ja, Lewis Pa, M. Stanton, J. Wilsher (2007)
Cystic fibrosis mortality and survival in the UK: 1947–2003European Respiratory Journal, 29
Aims To describe prenatal and preconception population carrier screening for cystic fibrosis (CF) in Australia and consider progress towards establishing a universal program. Method Medline and Embase databases (1989–2013) were searched for all publications with Australian data. Existing programs for CF carrier screening in Australia were reviewed and professional peak body websites accessed to determine recommendations. Results Twenty‐two studies met the inclusion criteria. Key stakeholder groups believe that prenatal and preconception carrier screening for CF should be available. Health‐economic analyses support that CF carrier screening can be cost‐effective. There are small programs for CF carrier screening, in Victoria, New South Wales and Queensland. The Human Genetics Society of Australasia (HGSA) specifically recommend that screening be offered to women and couples planning a pregnancy and in the early stages of pregnancy. Other peak bodies indirectly endorse the availability of CF carrier screening. Barriers to screening include not being offered screening, the cost of testing, inequity of access and an incorrect perception that not having a family history of CF lowers risk. Conclusions There is support for prenatal and preconception CF carrier screening by the community, health professionals and peak professional bodies in Australia. The barriers to development of a national screening program could be overcome with greater physician engagement and government support. Implications In the interest of equity, government funded testing should be routinely offered to all pregnant women and couples planning a pregnancy.
Australian and New Zealand Journal of Obstetrics and Gynaecology – Wiley
Published: Jan 1, 2014
Keywords: ; ;
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