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.
Highlights
Neonatal bloodspot screening (NBS) programmes are important and successful public health initiatives for early recognition of rare, congenital disorders [1]
RIVM-CvB alerts and advises the Ministry and other governmental parties about longer term developments and major changes, including innovations, that are important for NBS and that require measures and/or policy changes
Since the aim of our evaluation framework was primarily to gain insight into the practical feasibility of adding a condition to the NBS programme, for example cost-effectiveness is not included in the go/no go framework, because the GR evaluates this aspect in their role in the decision making process
Summary
Neonatal bloodspot screening (NBS) programmes are important and successful public health initiatives for early recognition of rare, congenital disorders [1]. To implement screening for each condition in the expanded NBS programme in a timely but responsible manner, a stakeholder process was employed, which we will summarise here. For each condition in the expansion, a final decision to start screening is made by the Ministry, based upon a final advice by the RIVM-CvB.
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