Developments in the heel prick screening programme

More timely submission of birth notification

As registry data on newborns were not supplied in sufficient time to carry out a timely blood spot test and hearing screening, a process has been initiated within the Perinatal Web-based Dossier (PWD). This process is supervised by a Steering Committee made up of representatives from the Perinatal Care Board, the Royal Dutch Organisation of Midwives (KNOV), the Dutch Society of Obstetrics and Gynaecology (NVOG), RIVM, the Netherlands Perinatal Registry (PRN) and the Dutch Paediatrics Society. The plan is to transfer birth registrations directly from the information systems of obstetric care providers to Praeventis, from where they would be passed to the YHC organisation’s digital dossier. This digital transfer to Praeventis first took place at a number of midwifery practices tn late 2010. In February 2011, this administrative birth registration was implemented in Praeventis at RIVM DVP. A further rollout at midwifery practices is planned for 2016.

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Fewer false-positives

Due to the optimisation of the screening methods, the number of children wrongly referred for diagnosis based on an anomalous newborn blood spot screening result has declined in recent years.

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Product for low-literacy users

Information for low-literacy users has been developed for the low-literacy user target group, and made available through the website.

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Implementation of blood spot screening in the Caribbean Netherlands

In October 2013, the Dutch Minister for Health, Welfare and Sport decided to introduce blood spot screening in the Caribbean Netherlands. The RIVM CvB has prepared the implementation of blood spot screening in the Caribbean Netherlands, at the instigation of the Dutch Ministry of Health, Welfare and Sport. Newborn blood spot screening commenced on Bonaire on 1 January 2015. St. Eustatius and Saba followed in October of that year.

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Legal information on screening programmes

Expectant parents and their partners are entitled to be fully informed, and their consent is required if they wish to participate in a screening programme. Participating in a screening programme also means that the relevant data is recorded. Why is that necessary? How is this data entered into a registration system? How is the data used, and how is people’s privacy protected? A website containing legal information about screening programmes for pregnant women and newborns is now available. It is intended for pregnant women, their partners and other interested parties. A brief summary of this legal information has also been added to the sites of the various prenatal and newborn screening programmes.

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Policy on the further use of bodily material

In anticipation of general legal regulations on the use (or further use) of bodily material (Control over Body Materials Act), clear policies should be established for population screening programmes with respect to the retention and use of bodily material taken in the context of screening programmes for objectives that fall within the scope of screening (primary diagnosis and follow-up diagnostic testing, internal quality control and improvement, education and training) and other purposes (further use). The current situation regarding the further use of bodily material is that, for non-traceable bodily material, if no objection is made then consent is assumed. In the case of the further use of traceable bodily material, seeking consent is mandatory.

At the instigation of the RIVM CvB, a description has been prepared of the legal conditions governing the storage and use of bodily material taken in the context of population screening programmes. In 2012/2013, the CvB submitted an advisory report to the Dutch Ministry of Health, Welfare and Sport concerning working with bodily material in screening programmes. Pending the decision of the Dutch Ministry of Health, Welfare and Sport, the existing procedure will need to be modified accordingly.

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Health Council of the Netherlands advisory report entitled ‘Neonatal screening: new recommendations’

On 8 April 2015, the Health Council of the Netherlands issued a wide-ranging advisory report on blood spot screening. The Health Council of the Netherlands recommends that the newborn blood spot screening be extended to include another fourteen disorders, that screening for homocystinuria be terminated, that no non-treatable disorders be included in the screening programme, and that the procedure of reporting carrier status for sickle cell anaemia be terminated.

On 9 July 2015, the Dutch Ministry of Health, Welfare and Sport published a policy position paper entitled ‘Newborn blood spot screening’. The Minister plans to extend the newborn blood spot screening to include another 14 disorders. However, the Minister asked RIVM CvB to carry out a feasibility study first, to determine the practicalities involved. The Minister subdivides the implementation of these disorders into three phases, involving short, medium and long preparation times.

The Minister has also adopted the Health Council of the Netherlands’ recommendation that screening for homocystinuria should be terminated.

Furthermore, the Minister indicated that she wants to set up a newborn blood spot screening for untreatable disorders, as an option for parents. She wants to see how – with all due care and attention – that might actually be organised.

With regard to reporting carrier status for sickle cell anaemia, the Minister is not prepared to modify the existing policy. Accordingly, this will be reported within the newborn blood spot screening programme, if the parents have raised no objection to this. However, the Minister is prepared to seek alternatives.
Finally, the Minister indicated that, in the case of newborn blood spot screening, she wants to be able to respond more quickly to innovations to achieve rapid health gains. For this reason, she plans to seek the Health Council of the Netherlands’ advice more frequently, as and when this is necessitated by new developments.

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