Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures
Newborn screening using dried blood spots (NBS) is widely acknowledged as a highly successful procedure in secondary prevention. For a number of congenital disorders, severe disability or death are impressively prevented by early detection and early treatment through NBS. However, as with any other...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-06-01
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| Series: | International Journal of Neonatal Screening |
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| Online Access: | https://www.mdpi.com/2409-515X/9/3/35 |
| _version_ | 1797579595778621440 |
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| author | Birgit Odenwald Inken Brockow Marianne Hanauer Anja Lüders Uta Nennstiel |
| author_facet | Birgit Odenwald Inken Brockow Marianne Hanauer Anja Lüders Uta Nennstiel |
| author_sort | Birgit Odenwald |
| collection | DOAJ |
| description | Newborn screening using dried blood spots (NBS) is widely acknowledged as a highly successful procedure in secondary prevention. For a number of congenital disorders, severe disability or death are impressively prevented by early detection and early treatment through NBS. However, as with any other screening, NBS can also cause harm, and the principle that “the overall benefits of screening should outweigh the harms” must be considered when introducing and implementing NBS programmes. This publication compiles the results of a systematic literature research on requirements for NBS infrastructure and procedures which was conducted as part of a research project on the quality and shortcomings of the NBS pathway in Germany. The compilation contains the requirements and recommendations for realising the principle of “maximise benefits and minimise harms” in relevant NBS pathway components such as parental education and information, coverage, timeliness, laboratory quality assurance, follow-up of abnormal results, confirmatory diagnostics, documentation, and evaluation. The results reflect the complexity of NBS infrastructure, and thus, they illustrate the importance of considering and implementing NBS as a well-coordinated public health programme with continuous quality management. Special attention should be paid to the perspectives of parents and families. Some NBS issues can substantially benefit from digital instruments or international cooperation. The literature review presented here has contributed to a concept of proposals for the advancement of NBS in Germany, and despite different settings, it may as well be of interest for other countries to achieve the best possible course and outcome of NBS for each child. |
| first_indexed | 2024-03-10T22:39:22Z |
| format | Article |
| id | doaj.art-9a8b44aa4fb94d0e9f806aa48c4dd7e5 |
| institution | Directory Open Access Journal |
| issn | 2409-515X |
| language | English |
| last_indexed | 2024-03-10T22:39:22Z |
| publishDate | 2023-06-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | International Journal of Neonatal Screening |
| spelling | doaj.art-9a8b44aa4fb94d0e9f806aa48c4dd7e52023-11-19T11:12:18ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2023-06-01933510.3390/ijns9030035Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and ProceduresBirgit Odenwald0Inken Brockow1Marianne Hanauer2Anja Lüders3Uta Nennstiel4Newborn Screening Centre/State Institute of Health, Bavarian Health and Food Safety Authority, 85764 Oberschleissheim, GermanyNewborn Screening Centre/State Institute of Health, Bavarian Health and Food Safety Authority, 85764 Oberschleissheim, GermanyNewborn Screening Centre/State Institute of Health, Bavarian Health and Food Safety Authority, 85764 Oberschleissheim, GermanyNewborn Screening Centre/State Institute of Health, Bavarian Health and Food Safety Authority, 85764 Oberschleissheim, GermanyNewborn Screening Centre/State Institute of Health, Bavarian Health and Food Safety Authority, 85764 Oberschleissheim, GermanyNewborn screening using dried blood spots (NBS) is widely acknowledged as a highly successful procedure in secondary prevention. For a number of congenital disorders, severe disability or death are impressively prevented by early detection and early treatment through NBS. However, as with any other screening, NBS can also cause harm, and the principle that “the overall benefits of screening should outweigh the harms” must be considered when introducing and implementing NBS programmes. This publication compiles the results of a systematic literature research on requirements for NBS infrastructure and procedures which was conducted as part of a research project on the quality and shortcomings of the NBS pathway in Germany. The compilation contains the requirements and recommendations for realising the principle of “maximise benefits and minimise harms” in relevant NBS pathway components such as parental education and information, coverage, timeliness, laboratory quality assurance, follow-up of abnormal results, confirmatory diagnostics, documentation, and evaluation. The results reflect the complexity of NBS infrastructure, and thus, they illustrate the importance of considering and implementing NBS as a well-coordinated public health programme with continuous quality management. Special attention should be paid to the perspectives of parents and families. Some NBS issues can substantially benefit from digital instruments or international cooperation. The literature review presented here has contributed to a concept of proposals for the advancement of NBS in Germany, and despite different settings, it may as well be of interest for other countries to achieve the best possible course and outcome of NBS for each child.https://www.mdpi.com/2409-515X/9/3/35newborn screeningneonatal screeningdried blood spotsscreening programmeevaluationprocess quality |
| spellingShingle | Birgit Odenwald Inken Brockow Marianne Hanauer Anja Lüders Uta Nennstiel Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures International Journal of Neonatal Screening newborn screening neonatal screening dried blood spots screening programme evaluation process quality |
| title | Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures |
| title_full | Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures |
| title_fullStr | Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures |
| title_full_unstemmed | Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures |
| title_short | Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures |
| title_sort | is our newborn screening working well a literature review of quality requirements for newborn blood spot screening nbs infrastructure and procedures |
| topic | newborn screening neonatal screening dried blood spots screening programme evaluation process quality |
| url | https://www.mdpi.com/2409-515X/9/3/35 |
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