Couple-Based Prenatal Screening for Cystic Fibrosis in Primary Care Settings

Doherty, Richard A.; Palomaki, Glenn E.; Kloza, Edward M.; Erickson, Jeryl L.; Haddow, James E.

doi:10.1002/(sici)1097-0223(199605)16:5<397::aid-pd864>3.0.co;2-i

Cited by 38 publications

(18 citation statements)

References 11 publications

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“…55,83,98,100,102 In addition, those women who were more satisfied with their choices were also more falsely reassured and made their choices less systematically -as measured by a three-item questionnaire -than women with slightly lower satisfaction scores. 48,54,134 However, those making decisions more systematically and reporting greater knowledge rated higher on worry scales. 48,63 These results suggest that making more informed decisions may be associated with increased anxiety.…”

Section: Are Informed Decisions Good For Decision-makers?mentioning

confidence: 98%

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

Green

Hewison²,

Bekker³

et al. 2004

Health Technol Assess

263

254

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Non-UK purchasers will have to pay a small fee for post and packing. For European countries the cost is £2 per monograph and for the rest of the world £3 per monograph.You can order HTA monographs from our Despatch Agents:-fax (with credit card or official purchase order) -post (with credit card or official purchase order or cheque) -phone during office hours (credit card only).Additionally the HTA website allows you either to pay securely by credit card or to print out your order and then post or fax it. Contact details are as follows: Payment methods Paying by chequeIf you pay by cheque, the cheque must be in pounds sterling, made payable to Direct Mail Works Ltd and drawn on a bank with a UK address. Paying by credit cardThe following cards are accepted by phone, fax, post or via the website ordering pages: Delta, Eurocard, Mastercard, Solo, Switch and Visa. We advise against sending credit card details in a plain email. Paying by official purchase orderYou can post or fax these, but they must be from public bodies (i.e. NHS or universities) within the UK. We cannot at present accept purchase orders from commercial companies or from outside the UK. How do I get a copy of HTA on CD?Please use the form on the HTA website (www.hta.ac.uk/htacd.htm). Or contact Direct Mail Works (see contact details above) by email, post, fax or phone. HTA on CD is currently free of charge worldwide.The website also provides information about the HTA Programme and lists the membership of the various committees. HTA NHS R&D HTA ProgrammeT he research findings from the NHS R&D Health Technology Assessment (HTA) Programme directly influence key decision-making bodies such as the National Institute for Clinical Excellence (NICE) and the National Screening Committee (NSC) who rely on HTA outputs to help raise standards of care. HTA findings also help to improve the quality of the service in the NHS indirectly in that they form a key component of the 'National Knowledge Service' that is being developed to improve the evidence of clinical practice throughout the NHS.The HTA Programme was set up in 1993. Its role is to ensure that high-quality research information on the costs, effectiveness and broader impact of health technologies is produced in the most efficient way for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined to include all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care, rather than settings of care.The HTA programme commissions research only on topics where it has identified key gaps in the evidence needed by the NHS. Suggestions for topics are actively sought from people working in the NHS, the public, consumer groups and professional bodies such as Royal Colleges and NHS Trusts.Research suggestions are carefully considered by panels of independent experts (including consumers) whose advice results in a ranked list of recommended research priorities. The HTA Programme then commissions the research team best suited t...

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Section: Are Informed Decisions Good For Decision-makers?mentioning

confidence: 98%

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

Green

Hewison²,

Bekker³

et al. 2004

Health Technol Assess

263

254

View full text Add to dashboard Cite

show abstract

“…74,78 When participants were asked to consider their reproductive intentions if they were found to be a carrier couple, the majority stated that they would not have (more) children, 10,71 would utilize prenatal diagnosis in future pregnancies, 10,52,71 were unsure, or would not terminate an affected fetus. 23,52,57 In actuality, 80-100% of the carrier couples identified utilized prenatal diagnosis, 38,39,41,51,60,66,75,[78][79][80]82,84,85 and the majority terminated an affected fetus. 38,51,60,66,75,79,80,82,84 Only one study reported the continuation of an affected pregnancy, with the carrier couple having twins who were both identified as being affected.…”

Section: Outcomes and Follow-up Of Screening For Cf Carrier Statusmentioning

confidence: 99%

“…23,52,57 In actuality, 80-100% of the carrier couples identified utilized prenatal diagnosis, 38,39,41,51,60,66,75,[78][79][80]82,84,85 and the majority terminated an affected fetus. 38,51,60,66,75,79,80,82,84 Only one study reported the continuation of an affected pregnancy, with the carrier couple having twins who were both identified as being affected. 39 The dissemination of information from carriers to other family members about increased risk is often evaluated when exploring the outcomes of screening.…”

Section: Outcomes and Follow-up Of Screening For Cf Carrier Statusmentioning

confidence: 99%

Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research

Ioannou

McClaren

Massie

et al. 2014

Genetics in Medicine

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“…One-step screening, however, is most eVectively accomplished using buccal cells collected by brush, "scoop" or mouthwash. [5][6][7][8][9][10][11][12][13][14] This method of collection is inexpensive and is well suited to collecting samples in primary care settings or at home. Buccal samples are stable when shipped at ambient temperature, and testing has been successfully performed on buccal lysates stored frozen for three to four years (Bradley LA, Klinger KW, Grody WW, personal communications).…”

Section: Logistics Of Samplingmentioning

confidence: 99%

Issues in implementing prenatal screening for cystic fibrosis: results of a working conference

et al. 1999

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Objective-To summarise a conference convened to examine how cystic fibrosis screening might appropriately be introduced into routine prenatal practice. Methods-Participants included experts from various relevant disciplines. Systematic reviews and data from individual trials were presented; issues were identified and discussed. Results-Judged by published criteria, prenatal cystic fibrosis screening is suitable for introduction. Screening can be performed cost eVectively by identifying racial/ethnic groups at suYcient risk and then using either of two models for delivering laboratory services. Validated educational materials exist. Ethical issues are not unique. Conclusions-Once adequate facilities for patient and provider education, testing, counselling, quality control, and monitoring are in place, individual programmes can begin prenatal screening for cystic fibrosis. (J Med Screen 1999;6:60-66)

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Couple-Based Prenatal Screening for Cystic Fibrosis in Primary Care Settings

Cited by 38 publications

References 11 publications

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research

Issues in implementing prenatal screening for cystic fibrosis: results of a working conference

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