As of 1 January 2017, the disorders alpha and beta thalassaemia will be added to the neonatal blood spot (‘heel prick’) screening programme. The Ministry of Health, Welfare and Sport has notified parliament of this decision.
The Ministry of Health, Welfare and Sport has notified parliament of this decision. This means that the first two of the envisaged set of fourteen new disorders will have been added to the blood spot test.
- Letter to parliament, “Extension of neonatal blood spot screening to include alpha and beta thalassaemia”
- Recommendation on introduction: Extension of neonatal blood spot screening to include alpha and beta thalassaemia
On advice from the Health Council of the Netherlands, the minister decided on 14 April 2015 to extend neonatal blood spot screening to include fourteen more disorders. She instructed the Centre for Population Screening at the RIVM National Institute for Public Health and the Environment (National Institute for Public Health and the Environment) to carry out an implementation study to look at the feasibility of implementing tests for these fourteen disorders. They were requested to prioritise the possibility of introducing tests more rapidly for disorders that are reported as subsidiary findings in the current blood spot screening: severe forms of alpha thalassaemia and beta thalassaemia In order to justify the rapid addition of these disorders, RIVM has already completed the first part of the feasibility study, in the form of the memorandum entitled “Extension of neonatal blood spot screening to include alpha and beta thalassaemia”. These disorders can be added to the blood spot screening as of 1 January 2017.
Alpha thalassaemia and beta thalassaemia
These are hereditary abnormalities of haemoglobin, a protein in the blood that is important in the transport of oxygen. These abnormalities cause anaemia. The severity of the disease can vary greatly. Blood spot screening looks primarily at the severe forms.
Adding the remaining 12 disorders will be described in the second part of the implementation feasibility study. This describes how the primary process, the organisation, the quality policy (including monitoring and evaluation), the information management, communication for professionals and (future) parents, the method of implementation and the financing of the proposed extension can be set up. For each disorder, what is possible and what is needed in order to add it to the existing screening programme will be considered. The feasibility study is being prepared in close cooperation with the relevant parties and it is expected that it will be presented to the Ministry of Health, Welfare and Sport in May 2017.
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