Information about the heel prick test in the national information system
In order to be able to offer the heel prick test, the RIVM Rijksinstituut voor Volksgezondheid en Milieu is given information about your child by the local council. This information, together with the result of the heel prick test, is entered into a national registration system. This system is called Praeventis.
If the result of the screening onderzoek is abnormal, then the results of your child’s heel prick test will also be entered into the NEORAH Neonatale Registratie Afwijkende Hielprikscreening registration system. Paediatricians also enter the results of the hospital tests into the NEORAH system.
The registration systems are necessary to ensure that the screening is carried out properly and that the quality of the screening is monitored. Anonymised information and results are used for national statistics and in scientific research. In this way, screening and treatment can be improved. The Netherlands Organisation for Applied Scientific Research (TNO) collects national statistics on behalf of RIVM.
If you do not want the information from your child’s heel prick screening to remain in an information system, then the personal details about your child can be unlinked from the screening results. The results can then no longer be traced back to your child. See www.pns.nl/hielprik/juridische-informatie for information on how to request this.
The national information systems are well protected. It is subject to the law on the protection of privacy. A privacy statement containing further information can be found on www.pns.nl/juridische-informatie-screeningen-bij-zwangeren-en-pasgebore…. This website tells you about the information systems and the sort of information that is stored in them.
What happens to the blood left over from the heel prick test?
After the heel prick screening test, the blood that is left over is stored at a laboratory. In order to check the quality of the heel prick screening test, the laboratory stores the blood for at least one year. Also, the paediatrician may ask to use the blood left over from this test for diagnostic tests for your child. This is only possible if the parents give their permission.
After the first year, the blood left over from the tests will be kept for another four years for scientific research. Scientific research with heel prick blood can only be done if a committee has determined that the research is useful. This means research to prevent diseases and/or to improve their treatment. The researcher will then be sent some heel prick blood left over from the tests, but no personal details of the child.
If a researcher wishes to use a child’s personal details, the parents are always asked for their permission first.
If you don’t want the blood left over from tests to be used for scientific research, please tell the person who does the heel prick test. This person will ask you to sign the heel prick card. The blood will then be destroyed one year after the heel prick test.
Do you have a complaint about the way the heel prick test is carried out? If so, please contact the organisation that carried out the heel prick test. Do you have a complaint about the heel prick test in general? More information about the complaints procedure can be found on www.rivm.nl/contact.