Newborn Screening for Hemoglobinopathies in Colorado

Githens, John H.

doi:10.1001/archpedi.1990.02150280088018

Cited by 45 publications

(19 citation statements)

References 29 publications

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“…41 Such interventions before screening and after receiving results may be particularly important given research results suggesting that uptake of information and counselling following SC newborn screening results can be low. 67,85,90,113 …”

Section: Communication Of Newborn Sickle Cell Carrier Resultsmentioning

confidence: 99%

“…Low service uptake has been identified as a particular issue among parents of SC carriers in the USA, 67,85,90,113 and is anecdotally recognised as common in practice in the UK. Research is needed to explore the scale of and reasons for non-uptake, and to identify the potentially neglected service needs of this group.…”

Section: Other Research With Parents Of Newborn Carriersmentioning

confidence: 99%

See 1 more Smart Citation

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Kai

Ulph²,

Cullinan³

et al. 2009

Health Technol Assess

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How to obtain copies of this and other HTA programme reports An electronic version of this publication, in Adobe Acrobat format, is available for downloading free of charge for personal use from the HTA website (www.hta.ac.uk). A fully searchable CD-ROM is also available (see below).Printed copies of HTA monographs cost £20 each (post and packing free in the UK) to both public and private sector purchasers from our Despatch Agents.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 NIHR Health Technology Assessment programmeT he Health Technology Assessment (HTA) programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care. The research findings from the HTA programme directly influence decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC). HTA findings also help to improve the quality of clinical practice in the NHS indirectly in that they form a key component of the 'National Knowledge Service'. The HTA programme is needs led in that it fills gaps in the evidence needed by the NHS. There are three routes to the start of projects. First is the commissioned route. Suggestions for research are actively sought from people working in t...

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Section: Communication Of Newborn Sickle Cell Carrier Resultsmentioning

confidence: 99%

Section: Other Research With Parents Of Newborn Carriersmentioning

confidence: 99%

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Kai

Ulph²,

Cullinan³

et al. 2009

Health Technol Assess

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“…[10][11][12][13] In the sub-Saharan African countries, with the highest prevalence of SS, most of the affected children die in the early years of life. 14,15 In the Republic of Benin in West Africa, no reliable estimation of mortality rate in SS children is presently available, but more than 50% of the affected children seem not to reach their fifth birthday.…”

Section: Introductionmentioning

confidence: 99%

Effect of a comprehensive clinical care program on disease course in severely ill children with sickle cell anemia in a sub-Saharan African setting

Rahimy

Gangbo

Ahouignan

et al. 2003

Blood

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“…24 Moreover, venepuncture for routine blood sampling is painful and upsetting for most children and is frequently identified as the worst part of the hospital experience. 25 The overall cost of preoperative screening including personnel, equipment, reagents and time required for screening was approximately $60 per test, although this does not include the cost of surgical delays, cancellations, or the emotional cost of a traumatic venepuncture performed under restraint.…”

Section: Discussionmentioning

confidence: 99%

Preoperative screening for sickle cell disease in children: clinical implications

Crawford

Galton

Abdelhaleem

2005

Can J Anesth/J Can Anesth

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Purpose: Preoperative screening of at-risk patients for sickle cell disease (SCD) is recommended as a method to decrease perioperative morbidity. However, the effectiveness of preoperative screening in accomplishing this goal has never been demonstrated. We undertook a retrospective study to determine the prevalence of positive test results among those screened preoperatively at our institution and to determine whether amendments to present screening guidelines can be recommended. Methods:The hematology laboratory database of a university teaching hospital was searched to identify all patients who underwent preoperative screening for SCD from October 1999 to October 2003. The medical records of those patients testing positive were reviewed.Results: Of 1,906 children screened preoperatively, 79 (4.1%) were diagnosed as having sickle cell trait and three (0.16%) as having some form of SCD: one had homozygous hemoglobin S and two had sickle-hemoglobin C disease. Two of the three had a family history for SCD and none had a preoperative hemoglobin concentration < 10 g·dL -1. No patient developed perioperative sickle-related complications. Conclusion:Preoperative screening of 1,906 children identified only one asymptomatic child with undiagnosed SCD and a negative family history, suggesting that routine preoperative screening for SCD is rarely of significant clinical value in our population. Had preoperative screening not been performed, no child requiring preoperative transfusion would have been missed, representing a long-run probability of at least 99.84% that no at-risk child would require transfusion. We recommend that preoperative screening for SCD be undertaken selectively, giving consideration to the risks and benefits of screening to the individual patient. Objectif

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Newborn Screening for Hemoglobinopathies in Colorado

Cited by 45 publications

References 29 publications

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Effect of a comprehensive clinical care program on disease course in severely ill children with sickle cell anemia in a sub-Saharan African setting

Preoperative screening for sickle cell disease in children: clinical implications

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