Forty Years of Heel Prick Screening in the Netherlands by J. Gerard LoeberForty Years of Heel Prick Screening in the Netherlands by J. Gerard Loeber

Forty Years of Heel Prick Screening in the Netherlands

byJ. Gerard Loeber, Carla G. van El

Hardcover | April 15, 2016

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This book aims to provide an overview of developments in the heel prick screening programme in the Netherlands in which similarities with the situation elsewhere in the world, where relevant, will be mentioned. In the Netherlands, the preparations for the national screening programme started in 1964. The formal launch of the programme was on September 1, 1974. In 2014, therefore this programme had existed 40 years.
The book is structured as follows. Chapter 1 describes how the programme began with one disease and over the years has continued to expand to currently covering 19 disorders. Chapter 2 focuses on the organisation of the screening programme and the agencies that have been involved over the years. Chapter 3 is intended to provide a global view of the programme in its current form. Chapter 4 describes how neonatal screening programmes elsewhere in the world developed and outline their main differences with the Dutch programme. Finally, Chapter 5 contains the summary and conclusions. This chosen structure leads to some aspects being mentioned more than once.
The book is intended for a broad audience that is interested in policy making on heel prick screening; hence, scientific depth is limited. Where possible and useful, references to the scientific literature have been included but completeness has not been pursued. The main sources were the archives of the National Steering Committees for Phenylketonuria and Congenital Hypothyroidism (LBCs), supplemented with interviews with the persons listed in Annex 1 and, if available, their personal archives.

Title:Forty Years of Heel Prick Screening in the NetherlandsFormat:HardcoverProduct dimensions:114 pages, 9.61 × 6.69 × 0.44 inShipping dimensions:9.61 × 6.69 × 0.44 inPublished:April 15, 2016Publisher:MDPI AGLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:3038421898

ISBN - 13:9783038421894


Table of Contents

Chapter 1: The Start and Expansion of the Heel Prick Screening ProgrammePeriod 1: Phenylketonuria (PKU) 1964-1974Developments in the US and EnglandDevelopments in the NetherlandsPeriod 2: Congenital Hypothyroidism (CH) 1975-1981International DevelopmentsDevelopments in the NetherlandsPeriod 3: Consolidation 1981-1995Evaluation and Programme of AdjustmentScientific ResearchDiscussions on Further ExpansionPeriod 4: Congenital Adrenal Hyperplasia (CAH) 1995-2002Pilot ScreeningStart of the Nationwide ProgramPeriod 5: Medium-Chain Acyl CoA Dehydrogenase Deficiency (MCADD) and Sickle Cell Disease 2002-2006Pilot Screening MCADDPilot Screening Sickle Cell DiseasePeriod 6: An Extended Screening Panel 2003-2007New Techniques and Their ConsequencesHealth Council Committee on Neonatal ScreeningPreparations on Many DomainsPeriod 7: Cystic Fibrosis (CF) 2007-2011Period 8: Future Expansions in 2011 and BeyondScreening in the Dutch CaribbeanChapter 2: Organisational Aspects, Windfalls and SetbacksNational Consultations over the YearsOrganisation of the Vaccination Registries over the YearsOrganisation of the Screening Laboratories over the YearsAnnual Evaluation of the Program; Privacy IssuesInforming and Involvement of ProfessionalsCoping with Leftover Blood SamplesControl by the LBCsChapter 3: The Heel Prick Screening Programme in its Current FormInformation during and Immediately after BirthThe Heel Prick in Daily PracticeLaboratory Analytical MethodologyProcedure in the DVP Offices Diagnosis after ReferralResults of 40 Years of ScreeningThe Opinions of ParentsChapter 4: Newborn Blood Spot Screening in Other CountriesSituation in the United StatesSituation in EuropeSituation ElsewhereInternational AssociationsChapter 5: Summary and ConclusionsFinallyAnnex 1: Notes on a Number of Organisations Involved in Heel Prick ScreeningAnnex 2: Persons Who Have ContributedAnnex 3: Referenced Documents, Scientific Literature and Internet SourcesAnnex 4: References of Illustrations