Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders

Marleen E Jansen; Anne W Klein; Erika C Buitenhuis; Wendy Rodenburg; Martina C Cornel

doi:10.3389/fped.2021.635353

Expanded Neonatal Bloodspot Screening Programmes: An Evaluation Framework to Discuss New Conditions With Stakeholders

Front Pediatr. 2021 Feb 22:9:635353. doi: 10.3389/fped.2021.635353. eCollection 2021.

Authors

Marleen E Jansen^{1

2}, Anne W Klein³, Erika C Buitenhuis³, Wendy Rodenburg¹, Martina C Cornel²

Affiliations

¹ Centre for Health Protection, National Institute for Public Health and the Environment, Utrecht, Netherlands.
² Department of Clinical Genetics, Section Community Genetics and Amsterdam Public Health Research Institute, Amsterdam University Medical Centers, Vrije Universiteit Amsterdam, Amsterdam, Netherlands.
³ Centre for Population Screening, National Institute of Public Health and the Environment, Utrecht, Netherlands.

Abstract

Neonatal bloodspot screening (NBS) programmes that screen for rare but serious conditions are expanding worldwide. Fast developments for testing and treatment put pressure on implementation processes. In 2015 the Netherlands embarked on an NBS expansion from 17 to 31 conditions. An evaluation framework was developed based on international NBS frameworks to gain insight in test properties, clinical findings, follow-up and implementation. A stakeholder process took place with implications for the planning of the expanded NBS panel. The evaluation framework progressed into a go/no go framework to start national screening, and is currently explored as basis for continuous evaluation of the NBS panel. The framework and stakeholder process may serve as an example for other programmes.

Keywords: decision making; evaluation framework; implementation; neonatal screening; public health policy cycle; stakeholders.