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5. Newborn Screening in a Pandemic—Lessons Learned

Author

Mlinaric, Matej, primary, Bonham, James R., additional, Kožich, Viktor, additional, Kölker, Stefan, additional, Majek, Ondrej, additional, Battelino, Tadej, additional, Torkar, Ana Drole, additional, Koracin, Vanesa, additional, Perko, Dasa, additional, Remec, Ziga Iztok, additional, Lampret, Barbka Repic, additional, Scarpa, Maurizio, additional, Schielen, Peter C. J. I., additional, Zetterström, Rolf H., additional, and Groselj, Urh, additional

Published
2023
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7. Towards Achieving Equity and Innovation in Newborn Screening across Europe

Author

Sikonja, Jaka, primary, Groselj, Urh, additional, Scarpa, Maurizio, additional, la Marca, Giancarlo, additional, Cheillan, David, additional, Kölker, Stefan, additional, Zetterström, Rolf H., additional, Kožich, Viktor, additional, Le Cam, Yann, additional, Gumus, Gulcin, additional, Bottarelli, Valentina, additional, van der Burg, Mirjam, additional, Dekkers, Eugenie, additional, Battelino, Tadej, additional, Prevot, Johan, additional, Schielen, Peter C. J. I., additional, and Bonham, James R., additional

Published
2022
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9. Towards Next-Generation Sequencing (NGS)-Based Newborn Screening: A Technical Study to Prepare for the Challenges Ahead

Author

Veldman, Abigail, primary, Kiewiet, Mensiena B. G., additional, Heiner-Fokkema, Margaretha Rebecca, additional, Nelen, Marcel R., additional, Sinke, Richard J., additional, Sikkema-Raddatz, Birgit, additional, Voorhoeve, Els, additional, Westra, Dineke, additional, Dollé, Martijn E. T., additional, Schielen, Peter C. J. I., additional, and van Spronsen, Francjan J., additional

Published
2022
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11. Neonatal Screening in Europe Revisited: An ISNS Perspective on the Current State and Developments Since 2010

Author

Loeber, J. Gerard, Platis, Dimitris, Zetterström, Rolf H., Almashanu, Shlomo, Boemer, François, Bonham, James R., Borde, Patricia, Brincat, Ian, Cheillan, David, Dekkers, Eugenie, Dimitrov, Dobry, Fingerhut, Ralph, Franzson, Leifur, Groselj, Urh, Hougaard, David, Knapkova, Maria, Kocova, Mirjana, Kotori, Vjosa, Kozich, Viktor, Kremezna, Anastasiia, Kurkijärvi, Riikka, La Marca, Giancarlo, Mikelsaar, Ruth, Milenkovic, Tatjana, Mitkin, Vyacheslav, Moldovanu, Florentina, Ceglarek, Uta, O´Grady, Loretta, Oltarzewski, Mariusz, Pettersen, Rolf D., Ramadza, Danijela, Salimbayeva, Damilya, Samardzic, Mira, Shamsiddinova, Markhabo, Songailiené, Jurgita, Szatmari, Ildiko, Tabatadze, Nazi, Tezel, Basak, Toromanovic, Alma, Tovmasyan, Irina, Usurelu, Natalia, Vevere, Parsla, Vilarinho, Laura, Vogazianos, Marios, Yahyaoui, Raquel, Zeyda, Maximilian, Schielen, Peter C. J. I., Loeber, J. Gerard, Platis, Dimitris, Zetterström, Rolf H., Almashanu, Shlomo, Boemer, François, Bonham, James R., Borde, Patricia, Brincat, Ian, Cheillan, David, Dekkers, Eugenie, Dimitrov, Dobry, Fingerhut, Ralph, Franzson, Leifur, Groselj, Urh, Hougaard, David, Knapkova, Maria, Kocova, Mirjana, Kotori, Vjosa, Kozich, Viktor, Kremezna, Anastasiia, Kurkijärvi, Riikka, La Marca, Giancarlo, Mikelsaar, Ruth, Milenkovic, Tatjana, Mitkin, Vyacheslav, Moldovanu, Florentina, Ceglarek, Uta, O´Grady, Loretta, Oltarzewski, Mariusz, Pettersen, Rolf D., Ramadza, Danijela, Salimbayeva, Damilya, Samardzic, Mira, Shamsiddinova, Markhabo, Songailiené, Jurgita, Szatmari, Ildiko, Tabatadze, Nazi, Tezel, Basak, Toromanovic, Alma, Tovmasyan, Irina, Usurelu, Natalia, Vevere, Parsla, Vilarinho, Laura, Vogazianos, Marios, Yahyaoui, Raquel, Zeyda, Maximilian, and Schielen, Peter C. J. I.

Abstract

Neonatal screening (NBS) was initiated in Europe during the 1960s with the screening for phenylketonuria. The panel of screened disorders (“conditions”) then gradually expanded, with a boost in the late 1990s with the introduction of tandem mass spectrometry (MS/MS), making it possible to screen for 40–50 conditions using a single blood spot. The most recent additions to screening programmes (screening for cystic fibrosis, severe combined immunodeficiency and spinal muscular atrophy) were assisted by or realised through the introduction of molecular technologies. For this survey, we collected data from 51 European countries. We report the developments between 2010 and 2020 and highlight the achievements reached with the progress made in this period. We also identify areas where further progress can be made, mainly by exchanging knowledge and learning from experiences in neighbouring countries. Between 2010 and 2020, most NBS programmes in geographical Europe matured considerably, both in terms of methodology (modernised) and with regard to the panel of conditions screened (expanded). These developments indicate that more collaboration in Europe through European organisations is gaining momentum. We can only accomplish the timely detection of newborn infants potentially suffering from one of the many rare diseases and take appropriate action by working together.

Published
2021

21. Neonatal carnitine concentrations in relation to gestational age and weight

Author

Crefcoeur, Loek L., primary, Sain‐van der Velden, Monique G. M., additional, Ferdinandusse, Sacha, additional, Langeveld, Mirjam, additional, Maase, Rose, additional, Vaz, Frédéric M., additional, Visser, Gepke, additional, Wanders, Ronald J.A., additional, Wijburg, Frits A., additional, Verschoof‐Puite, Rendelien K., additional, and Schielen, Peter C. J. I., additional

Published
2020
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22. Critical evaluation of the newborn screening for congenital hypothyroidism in the Netherlands

Author

Stroek, Kevin, primary, Heijboer, Annemieke C, additional, Bouva, Marelle J, additional, van der Ploeg, Catharina P B, additional, Heijnen, Marie-Louise A, additional, Weijman, Gert, additional, Bosch, Annet M, additional, de Jonge, Robert, additional, Schielen, Peter C J I, additional, van Trotsenburg, A S Paul, additional, and Boelen, Anita, additional

Published
2020
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23. Evaluation of 11 years of newborn screening for maple syrup urine disease in the Netherlands and a systematic review of the literature: Strategies for optimization

Author

Stroek, Kevin, primary, Boelen, Anita, additional, Bouva, Marelle J., additional, De Sain‐van der Velden, Monique, additional, Schielen, Peter C. J. I., additional, Maase, Rose, additional, Engel, Henk, additional, Jakobs, Bernadette, additional, Kluijtmans, Leo A. J., additional, Mulder, Margot F., additional, Rubio‐Gozalbo, M. E., additional, Spronsen, Francjan J., additional, Visser, Gepke, additional, Vries, Maaike C., additional, Williams, Monique, additional, Heijboer, Annemieke C., additional, Kemper, Evelien A., additional, and Bosch, Annet M., additional

Published
2020
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24. External validation of prognostic models for preeclampsia in a Dutch multicenter prospective cohort

Author

Lamain-de Ruiter, Marije, Kwee, Anneke, Naaktgeboren, Christiana A, Louhanepessy, Rebecca D, De Groot, Inge, Evers, Inge M, Groenendaal, Floris, Hering, Yolanda R, Huisjes, Anjoke J M, Kirpestein, Cornel, Monincx, Wilma M, Schielen, Peter C J I, Van 't Zelfde, Annewil, Van Oirschot, Charlotte M, Vankan-Buitelaar, Simone A, Vonk, Mariska A A W, Wiegers, Therese A, Zwart, Joost J, Moons, Karel G M, Franx, Arie, Koster, Maria P H, Lamain-de Ruiter, Marije, Kwee, Anneke, Naaktgeboren, Christiana A, Louhanepessy, Rebecca D, De Groot, Inge, Evers, Inge M, Groenendaal, Floris, Hering, Yolanda R, Huisjes, Anjoke J M, Kirpestein, Cornel, Monincx, Wilma M, Schielen, Peter C J I, Van 't Zelfde, Annewil, Van Oirschot, Charlotte M, Vankan-Buitelaar, Simone A, Vonk, Mariska A A W, Wiegers, Therese A, Zwart, Joost J, Moons, Karel G M, Franx, Arie, and Koster, Maria P H

Published
2019

25. External validation of prognostic models for preeclampsia in a Dutch multicenter prospective cohort

Author

MS Verloskunde, Circulatory Health, Other research (not in main researchprogram), Epi Methoden Team 1, JC onderzoeksprogramma Methodologie, MS Neonatologie, Brain, Child Health, Regenerative Medicine and Stem Cells, Genetica Sectie Metabole Diagnostiek, Epi Methoden, Cancer, Metabole ziekten patientenzorg, Lamain-de Ruiter, Marije, Kwee, Anneke, Naaktgeboren, Christiana A, Louhanepessy, Rebecca D, De Groot, Inge, Evers, Inge M, Groenendaal, Floris, Hering, Yolanda R, Huisjes, Anjoke J M, Kirpestein, Cornel, Monincx, Wilma M, Schielen, Peter C J I, Van 't Zelfde, Annewil, Van Oirschot, Charlotte M, Vankan-Buitelaar, Simone A, Vonk, Mariska A A W, Wiegers, Therese A, Zwart, Joost J, Moons, Karel G M, Franx, Arie, Koster, Maria P H, MS Verloskunde, Circulatory Health, Other research (not in main researchprogram), Epi Methoden Team 1, JC onderzoeksprogramma Methodologie, MS Neonatologie, Brain, Child Health, Regenerative Medicine and Stem Cells, Genetica Sectie Metabole Diagnostiek, Epi Methoden, Cancer, Metabole ziekten patientenzorg, Lamain-de Ruiter, Marije, Kwee, Anneke, Naaktgeboren, Christiana A, Louhanepessy, Rebecca D, De Groot, Inge, Evers, Inge M, Groenendaal, Floris, Hering, Yolanda R, Huisjes, Anjoke J M, Kirpestein, Cornel, Monincx, Wilma M, Schielen, Peter C J I, Van 't Zelfde, Annewil, Van Oirschot, Charlotte M, Vankan-Buitelaar, Simone A, Vonk, Mariska A A W, Wiegers, Therese A, Zwart, Joost J, Moons, Karel G M, Franx, Arie, and Koster, Maria P H

Published
2019

26. A nationwide retrospective observational study of population newborn screening for medium‐chain acyl‐CoA dehydrogenase (MCAD) deficiency in the Netherlands

Author

Jager, Emmalie A., primary, Kuijpers, Myrthe M., additional, Bosch, Annet M., additional, Mulder, Margot F., additional, Gozalbo, Estela R., additional, Visser, Gepke, additional, Vries, Maaike, additional, Williams, Monique, additional, Waterham, Hans R., additional, Spronsen, Francjan J., additional, Schielen, Peter C. J. I., additional, and Derks, Terry G. J., additional

Published
2019
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27. External validation of prognostic models for preeclampsia in a Dutch multicenter prospective cohort

Author

Lamain-de Ruiter, Marije, primary, Kwee, Anneke, additional, Naaktgeboren, Christiana A., additional, Louhanepessy, Rebecca D., additional, De Groot, Inge, additional, Evers, Inge M., additional, Groenendaal, Floris, additional, Hering, Yolanda R., additional, Huisjes, Anjoke J. M., additional, Kirpestein, Cornel, additional, Monincx, Wilma M., additional, Schielen, Peter C. J. I., additional, Van ’T Zelfde, Annewil, additional, Van Oirschot, Charlotte M., additional, Vankan-Buitelaar, Simone A., additional, Vonk, Mariska A. A. W., additional, Wiegers, Therese A., additional, Zwart, Joost J., additional, Moons, Karel G. M., additional, Franx, Arie, additional, and Koster, Maria P. H., additional

Published
2019
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29. Evaluation of the Dutch neonatal screening for congenital adrenal hyperplasia

Author

van der Linde, Annelieke A A, primary, Schönbeck, Yvonne, additional, van der Kamp, Hetty J, additional, van den Akker, Erica L T, additional, van Albada, Mirjam E, additional, Boelen, Anita, additional, Finken, Martijn J J, additional, Hannema, Sabine E, additional, Hoorweg-Nijman, Gera, additional, Odink, Roelof J, additional, Schielen, Peter C J I, additional, Straetemans, Saartje, additional, van Trotsenburg, Paul S, additional, Claahsen-van der Grinten, Hedi L, additional, and Verkerk, Paul H, additional

Published
2019
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30. Raising awareness of false positive newborn screening results arising from pivalate-containing creams and antibiotics in Europe when screening for isovaleric acidaemia

Author

Bonham, James R., Carling, Rachel S., Lindner, Martin, Franzson, Leifur, Zetterstrom, Rolf, Boemer, Francois, Cerone, Roberto, Eyskens, Francois, Vilarinho, Laura, Hougaard, David Michael, Schielen, Peter C. J. I., Bonham, James R., Carling, Rachel S., Lindner, Martin, Franzson, Leifur, Zetterstrom, Rolf, Boemer, Francois, Cerone, Roberto, Eyskens, Francois, Vilarinho, Laura, Hougaard, David Michael, and Schielen, Peter C. J. I.

Abstract

While the early and asymptomatic recognition of treatable conditions offered by newborn screening confers clear health benefits for the affected child, the clinical referral of patients with screen positive results can cause significant harm for some families. The use of pivalate-containing antibiotics and more recently the inclusion of neopentanoate as a component within moisturising creams used as nipple balms by nursing mothers can result in a significant number of false positive results when screening for isovaleric acidaemia (IVA) by measuring C5 acylcarnitine. A recent survey conducted within centres from nine countries indicated that this form of contamination had been or was a significant confounding factor in the detection of IVA in seven of the nine who responded. In three of these seven the prominent cause was believed to derive from the use of moisturising creams and in another three from antibiotics containing pivalate; one country reported that the cause was mixed. As a result, four of these seven centres routinely perform second tier testing to resolve C5 isobars when an initial C5 result is elevated, and a fifth is considering making this change within their national programme. The use of creams containing neopentanoate by nursing mothers and evolving patterns in the prescription of pivalate-containing antibiotics during pregnancy require those involved in the design and operation of newborn screening programmes used to detect IVA and the doctors who receive clinical referrals from these programmes to maintain an awareness of the potential impact of this form of interference on patient results.

Published
2018

31. Parents' Perspectives and Societal Acceptance of Implementation of Newborn Screening for SCID in the Netherlands.

Author

Blom, Maartje, Bredius, Robbert G. M., Jansen, Marleen E., Weijman, Gert, Kemper, Evelien A., Vermont, Clementien L., Hollink, Iris H. I. M., Dik, Willem A., van Montfrans, Joris M., van Gijn, Mariëlle E., Henriet, Stefanie S., van Aerde, Koen J., Koole, Wouter, Lankester, Arjan C., Dekkers, Eugènie H. B. M., Schielen, Peter C. J. I., de Vries, Martine C., Henneman, Lidewij, and van der Burg, Mirjam

Subjects
NEWBORN screening, SEVERE combined immunodeficiency, PARENTS
Abstract

Purpose: While neonatal bloodspot screening (NBS) for severe combined immunodeficiency (SCID) has been introduced more than a decade ago, implementation in NBS programs remains challenging in many countries. Even if high-quality test methods and follow-up care are available, public uptake and parental acceptance are not guaranteed. The aim of this study was to describe the parental perspective on NBS for SCID in the context of an implementation pilot. Psychosocial aspects have never been studied before for NBS for SCID and are important for societal acceptance, a major criterion when introducing new disorders in NBS programs. Methods: To evaluate the perspective of parents, interviews were conducted with parents of newborns with abnormal SCID screening results (N = 17). In addition, questionnaires about NBS for SCID were sent to 2000 parents of healthy newborns who either participated or declined participation in the SONNET-study that screened 140,593 newborns for SCID. Results: Support for NBS for SCID was expressed by the majority of parents in questionnaires from both a public health perspective and a personal perspective. Parents emphasized the emotional impact of an abnormal screening result in interviews. (Long-term) stress and anxiety can be experienced during and after referral indicating the importance of uniform follow-up protocols and adequate information provision. Conclusion: The perspective of parents has led to several recommendations for NBS programs that are considering screening for SCID or other disorders. A close partnership of NBS programs' stakeholders, immunologists, geneticists, and pediatricians-immunologists in different countries is required for moving towards universal SCID screening for all infants. [ABSTRACT FROM AUTHOR]

Published
2021
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33. Evaluation of 11 years of newborn screening for maple syrup urine disease in the Netherlands and a systematic review of the literature: Strategies for optimization.

Author

Stroek, Kevin, Boelen, Anita, Bouva, Marelle J., De Sain‐van der Velden, Monique, Schielen, Peter C. J. I., Maase, Rose, Engel, Henk, Jakobs, Bernadette, Kluijtmans, Leo A. J., Mulder, Margot F., Rubio‐Gozalbo, M. E., Spronsen, Francjan J., Visser, Gepke, Vries, Maaike C., Williams, Monique, Heijboer, Annemieke C., Kemper, Evelien A., and Bosch, Annet M.

Published
2020
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35. Perspectives, preferences and needs regarding early prediction of preeclampsia in Dutch pregnant women: a qualitative study

Author

Klinisch Verloskundigen, Other research (not in main researchprogram), Eerstelijnsverloskundigen, Circulatory Health, MS Verloskunde, Genetica Sectie Metabole Diagnostiek, DV&B-MT-Medisch, Brain, Child Health, Groep Timmers, Crombag, Neeltje M T H, Lamain-de Ruiter, Marije, Kwee, Anneke, Schielen, Peter C J I, Bensing, Jozien M, Visser, Gerard H A, Franx, Arie, Koster, Maria P H, Klinisch Verloskundigen, Other research (not in main researchprogram), Eerstelijnsverloskundigen, Circulatory Health, MS Verloskunde, Genetica Sectie Metabole Diagnostiek, DV&B-MT-Medisch, Brain, Child Health, Groep Timmers, Crombag, Neeltje M T H, Lamain-de Ruiter, Marije, Kwee, Anneke, Schielen, Peter C J I, Bensing, Jozien M, Visser, Gerard H A, Franx, Arie, and Koster, Maria P H

Published
2017

38. Inborn Errors of Metabolism That Cause Sudden Infant Death : A Systematic Review with Implications for Population Neonatal Screening Programmes

Author

van Rijt, Willemijn J., Koolhaas, Geneviève D., Bekhof, Jolita, Heiner Fokkema, M. Rebecca, de Koning, Tom J., Visser, Gepke, Schielen, Peter C J I, van Spronsen, Francjan J., Derks, Terry G J, van Rijt, Willemijn J., Koolhaas, Geneviève D., Bekhof, Jolita, Heiner Fokkema, M. Rebecca, de Koning, Tom J., Visser, Gepke, Schielen, Peter C J I, van Spronsen, Francjan J., and Derks, Terry G J

Published
2016

39. Pregnancy associated plasma protein-a and placental growth factor in a sub-Saharan African population : A nested cross-sectional study

Author

Browne, Joyce L., Klipstein-Grobusch, Kerstin, Koster, Maria P H, Ramamoorthy, Dhivya, Antwi, Edward, Belmouden, Idder, Franx, Arie, Grobbee, Diederick E., Schielen, Peter C J I, Browne, Joyce L., Klipstein-Grobusch, Kerstin, Koster, Maria P H, Ramamoorthy, Dhivya, Antwi, Edward, Belmouden, Idder, Franx, Arie, Grobbee, Diederick E., and Schielen, Peter C J I

Published
2016

41. Inborn Errors of Metabolism That Cause Sudden Infant Death: A Systematic Review with Implications for Population Neonatal Screening Programmes

Author

Metabole ziekten patientenzorg, Child Health, Genetica Sectie Metabole Diagnostiek, van Rijt, Willemijn J., Koolhaas, Geneviève D., Bekhof, Jolita, Heiner Fokkema, M. Rebecca, de Koning, Tom J., Visser, Gepke, Schielen, Peter C J I, van Spronsen, Francjan J., Derks, Terry G J, Metabole ziekten patientenzorg, Child Health, Genetica Sectie Metabole Diagnostiek, van Rijt, Willemijn J., Koolhaas, Geneviève D., Bekhof, Jolita, Heiner Fokkema, M. Rebecca, de Koning, Tom J., Visser, Gepke, Schielen, Peter C J I, van Spronsen, Francjan J., and Derks, Terry G J

Published
2016

42. Pregnancy associated plasma protein-a and placental growth factor in a sub-Saharan African population: A nested cross-sectional study

Author

Global Health, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Metabole ziekten patientenzorg, DV&B-MT-Medisch, Brain, Child Health, Cardiovasculaire Epi Team 9, Genetica Sectie Metabole Diagnostiek, Browne, Joyce L., Klipstein-Grobusch, Kerstin, Koster, Maria P H, Ramamoorthy, Dhivya, Antwi, Edward, Belmouden, Idder, Franx, Arie, Grobbee, Diederick E., Schielen, Peter C J I, Global Health, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Metabole ziekten patientenzorg, DV&B-MT-Medisch, Brain, Child Health, Cardiovasculaire Epi Team 9, Genetica Sectie Metabole Diagnostiek, Browne, Joyce L., Klipstein-Grobusch, Kerstin, Koster, Maria P H, Ramamoorthy, Dhivya, Antwi, Edward, Belmouden, Idder, Franx, Arie, Grobbee, Diederick E., and Schielen, Peter C J I

Published
2016

43. Reasons for accepting or declining Down syndrome screening in Dutch prospective mothers within the context of national policy and healthcare system characteristics: a qualitative study

Author

Klinisch Verloskundigen, Genetica Sectie Metabole Diagnostiek, MS Verloskunde, Crombag, Neeltje M T H, Boeije, Hennie, Iedema-Kuiper, Rita, Schielen, Peter C J I, Visser, Gerard H A, Bensing, Jozien M, Klinisch Verloskundigen, Genetica Sectie Metabole Diagnostiek, MS Verloskunde, Crombag, Neeltje M T H, Boeije, Hennie, Iedema-Kuiper, Rita, Schielen, Peter C J I, Visser, Gerard H A, and Bensing, Jozien M

Published
2016

44. Explaining variation in Down's syndrome screening uptake: Comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews

Author

Crombag, Neeltje M T H, Vellinga, Ynke E., Kluijfhout, Sandra A., Bryant, Louise D., Ward, Pat A., Iedema-Kuiper, Rita, Schielen, Peter C J I, Bensing, Jozien M., Visser, Gerard H A, Tabor, Ann, Hirst, Janet, Stress and self-regulation, Leerstoel Bensing, Stress and self-regulation, and Leerstoel Bensing

Subjects
Adult, National Health Programs, Service delivery framework, Denmark, Decision Making, Uptake, Utilization of healthcare, Antenatal screening, Health administration, Interviews as Topic, Down’s syndrome, Nursing, Pregnancy, Environmental health, Prenatal Diagnosis, Health care, Stakeholder analysis, Medicine, Humans, Down's syndrome, Health policy, Qualitative Research, International comparison, Netherlands, Medicine(all), Cultural Characteristics, business.industry, Nursing research, Health Policy, Stakeholder, England, Socioeconomic Factors, Female, Down Syndrome, business, Qualitative research, Research Article
Abstract

Background The offer of prenatal Down’s syndrome screening is part of routine antenatal care in most of Europe; however screening uptake varies significantly across countries. Although a decision to accept or reject screening is a personal choice, it is unlikely that the widely differing uptake rates across countries can be explained by variation in individual values alone. The aim of this study was to compare Down’s syndrome screening policies and programmes in the Netherlands, where uptake is relatively low ( 90% respectively), in an attempt to explain the observed variation in national uptake rates. Methods We used a mixed methods approach with an embedded design: a) documentary analysis and b) expert stakeholder analysis. National central statistical offices and legal documents were studied first to gain insight in demographic characteristics, cultural background, organization and structure of healthcare followed by documentary analysis of primary and secondary sources on relevant documents on DSS policies and programme. To enhance interpretation of these findings we performed in-depth interviews with relevant expert stakeholders. Results There were many similarities in the demographics, healthcare systems, government abortion legislation and Down’s syndrome screening policy across the studied countries. However, the additional cost for Down’s syndrome screening over and above standard antenatal care in the Netherlands and an emphasis on the ‘right not to know’ about screening in this country were identified as potential explanations for the ‘low’ uptake rates of Down’s syndrome screening in the Netherlands. The social context and positive framing of the offer at the service delivery level may play a role in the relatively high uptake rates in Denmark. Conclusions This paper makes an important contribution to understanding how macro-level demographic, social and healthcare delivery factors may have an impact on national uptake rates for Down’s syndrome screening. It has suggested a number of policy level and system characteristics that may go some way to explaining the relatively low uptake rates of Down’s syndrome screening in the Netherlands when compared to England and Denmark. Electronic supplementary material The online version of this article (doi:10.1186/1472-6963-14-437) contains supplementary material, which is available to authorized users.

Published
2014

47. Determinants of first trimester combined test participation within the central region of the Netherlands

Author

MS Verloskunde, Cancer, Child Health, Circulatory Health, Groep Timmers, Crombag, Neeltje M. T. H., Schielen, Peter C. J. I., Hukkelhoven, Chantal W., Iedema, Rita, Bensing, Jozien M., Visser, Gerard H. A., Stoutenbeek, Philip, Koster, Maria P. H., Koster, M.P.H. (Wendy), MS Verloskunde, Cancer, Child Health, Circulatory Health, Groep Timmers, Crombag, Neeltje M. T. H., Schielen, Peter C. J. I., Hukkelhoven, Chantal W., Iedema, Rita, Bensing, Jozien M., Visser, Gerard H. A., Stoutenbeek, Philip, Koster, Maria P. H., and Koster, M.P.H. (Wendy)

Published
2015

50. Explaining variation in Down's syndrome screening uptake: Comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews

Author

Stress and self-regulation, Leerstoel Bensing, Crombag, Neeltje M T H, Vellinga, Ynke E., Kluijfhout, Sandra A., Bryant, Louise D., Ward, Pat A., Iedema-Kuiper, Rita, Schielen, Peter C J I, Bensing, Jozien M., Visser, Gerard H A, Tabor, Ann, Hirst, Janet, Stress and self-regulation, Leerstoel Bensing, Crombag, Neeltje M T H, Vellinga, Ynke E., Kluijfhout, Sandra A., Bryant, Louise D., Ward, Pat A., Iedema-Kuiper, Rita, Schielen, Peter C J I, Bensing, Jozien M., Visser, Gerard H A, Tabor, Ann, and Hirst, Janet

Published
2014

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