ALD testing within the SCAN study will commence on January 1, 2021 and continue for at least one year thereafter. The SCAN study will take place in four provinces: Noord-Holland, Utrecht, Gelderland and Flevoland. Therefore, if your baby is born in one of these provinces, testing for ALD can be done.
We are requesting permission to test your child’s heel prick blood for ALD. No extra blood will be collected from your baby in order to perform this test.
What is ALD?
ALD is a rare, inherited metabolic disease. Boys with ALD are at risk of developing life-threatening damage to their brain and adrenal glands. Early diagnosis can lead to life-saving treatment, therefore, it is very important to diagnose ALD in boys early.
Girls with ALD develop a different, generally milder form of ALD. This form manifests at an older age (40-60 yrs) and is not treatable. For that reason the SCAN study focuses on detecting boys with ALD.
How to participate?
The practice of limiting screening to males is a new way of conducting newborn screening. In order to set up a reliable test it is important to include heel prick blood from both boys and girls. Therefore, we request that parents of both boys and girls participate in the SCAN study.
If you prefer your child not to be tested for ALD, you may indicate this to the screener. Your objection will be recorded on the heel prick card. When you choose not to participate in the SCAN-study, testing for the other diseases in the newborn screening will not be affected.
Participating in the SCAN-study is voluntary and free of cost.