There is a considerable and long-standing variation in the practice of newborn screening among the countries of Europe. The reasons for this partly reflect the differences in population and resources available within each country but also represent the differing approaches among policy makers when deciding upon the benefits and harms of screening and how these may be assessed and decisions made at a national level.
Within ISNS we recognise that huge benefits conferred by the early detection and treatment offered by newborn screening and also recognise the care required to deliver effective programmes that protect the public and target screening to individual children who benefit most.
EURORDIS have recently developed a set of principles which they would encourage countries to endorse and adopt. These may stimulate some interesting discussion as they also advocate in favour of screening for conditions for which a direct and effective treatment may not be available. Through the publication of the principles EURORDIS seeks to raise the profile of newborn screening and the way that this should be conducted to ensure a successful programme.
This publication is attached : ‘Key Principles of Newborn Screening’
ISNS has also been working closely with IPOPI for several years in an effort to promote the importance of newborn screening on the EU health policy agenda. ISNS and IPOPI are currently working with the disease specific European Reference Networks to support decision makers and those involved in formulating public health strategy to consider afresh the value of newborn screening for their population and ensure an equity of access for families in the countries that make up Europe.
The work is taking place within a collaborative framework known as ‘Screen4Rare’ which can be accessed at:
https://ipopi.org/screen4rare-continues-advocating-for-newborn-screening-for-rare-diseases/
The aim of this project is to support policy makers to develop appropriate and well managed programmes of newborn screening designed to match the needs of their population. It is hoped that by working together we can achieve an equitable approach that supports best practice and offers a transnational perspective to evaluate the impact and outcome of newborn screening for the babies who benefit from this life changing and sometimes life-saving intervention.