Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>?
Newborn screening (NBS) for cystic fibrosis (CF) has been performed in many countries for as long as four decades and has transformed the routine method for diagnosing this genetic disease and improved the quality and quantity of life for people with this potentially fatal disorder. Each region has...
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| Format: | Article |
| Language: | English |
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MDPI AG
2020-03-01
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| Series: | International Journal of Neonatal Screening |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2409-515X/6/1/18 |
| _version_ | 1818992823131701248 |
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| author | Virginie Scotet Hector Gutierrez Philip M. Farrell |
| author_facet | Virginie Scotet Hector Gutierrez Philip M. Farrell |
| author_sort | Virginie Scotet |
| collection | DOAJ |
| description | Newborn screening (NBS) for cystic fibrosis (CF) has been performed in many countries for as long as four decades and has transformed the routine method for diagnosing this genetic disease and improved the quality and quantity of life for people with this potentially fatal disorder. Each region has typically undertaken CF NBS after analysis of the advantages, costs, and challenges, particularly regarding the relationship of benefits to risks. The very fact that all regions that began screening for CF have continued their programs implies that public health and clinical leaders consider early diagnosis through screening to be <i>worthwhile.</i> Currently, many regions where CF NBS has not yet been introduced are considering options and in some situations negotiating with healthcare authorities as policy and economic factors are being debated. To consider the assigned question (<i>where is it worthwhile</i>?), we have completed a worldwide analysis of data and factors that should be considered when CF NBS is being contemplated. This article describes the lessons learned from the journey toward universal screening wherever CF is prevalent and an analytical framework for application in those undecided regions. In fact, the lessons learned provide insights about what is necessary to make CF NBS <i>worthwhile</i>. |
| first_indexed | 2024-12-20T20:32:17Z |
| format | Article |
| id | doaj.art-3ad4590b3f55453daedef2a5f0311150 |
| institution | Directory Open Access Journal |
| issn | 2409-515X |
| language | English |
| last_indexed | 2024-12-20T20:32:17Z |
| publishDate | 2020-03-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | International Journal of Neonatal Screening |
| spelling | doaj.art-3ad4590b3f55453daedef2a5f03111502022-12-21T19:27:19ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2020-03-01611810.3390/ijns6010018ijns6010018Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>?Virginie Scotet0Hector Gutierrez1Philip M. Farrell2Inserm, University of Brest, EFS, UMR 1078, GGB, F-29200 Brest, FranceDepartment of Pediatrics, University of Alabama at Birmingham, Birmingham, AL 35233, USADepartments of Pediatrics and Population Health Sciences, University of Wisconsin School of Medicine and Public Health, Madison, WI 53705, USANewborn screening (NBS) for cystic fibrosis (CF) has been performed in many countries for as long as four decades and has transformed the routine method for diagnosing this genetic disease and improved the quality and quantity of life for people with this potentially fatal disorder. Each region has typically undertaken CF NBS after analysis of the advantages, costs, and challenges, particularly regarding the relationship of benefits to risks. The very fact that all regions that began screening for CF have continued their programs implies that public health and clinical leaders consider early diagnosis through screening to be <i>worthwhile.</i> Currently, many regions where CF NBS has not yet been introduced are considering options and in some situations negotiating with healthcare authorities as policy and economic factors are being debated. To consider the assigned question (<i>where is it worthwhile</i>?), we have completed a worldwide analysis of data and factors that should be considered when CF NBS is being contemplated. This article describes the lessons learned from the journey toward universal screening wherever CF is prevalent and an analytical framework for application in those undecided regions. In fact, the lessons learned provide insights about what is necessary to make CF NBS <i>worthwhile</i>.https://www.mdpi.com/2409-515X/6/1/18cystic fibrosisnewborn screeningincidencemalnutritioncosthealth policy |
| spellingShingle | Virginie Scotet Hector Gutierrez Philip M. Farrell Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>? International Journal of Neonatal Screening cystic fibrosis newborn screening incidence malnutrition cost health policy |
| title | Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>? |
| title_full | Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>? |
| title_fullStr | Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>? |
| title_full_unstemmed | Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>? |
| title_short | Newborn Screening for CF across the Globe—<i>Where Is It Worthwhile</i>? |
| title_sort | newborn screening for cf across the globe i where is it worthwhile i |
| topic | cystic fibrosis newborn screening incidence malnutrition cost health policy |
| url | https://www.mdpi.com/2409-515X/6/1/18 |
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