Meeting in the EU Parliament in support of Newborn Screening

On 30th January 2019 Fabio Massimo Castaldo, Vice President of the EU Parliament, hosted a discussion group to welcome the introduction of a new model for screening in Italy and to explore the wider implications within the EU.

Vice President Castaldo opened the meeting by stressing the importance of Newborn Screening and the great achievement of Senator Paola Taverna, Vice President of Senato della Republica, in achieving supportive legislation within Italy to ensure that all babies are offered screening for almost 40 conditions shortly after birth.

Prof Giancarlo La Marca, President of the Italian for Inborn Errors of Metabolism and Newborn Screening, welcomed the introduction of this new law which not only ensured the availability of newborn screening but also offered a greater degree of co-ordination within the programme delivered from 14 regional screening laboratories.

The aim of the programme is to co-ordinate testing, confirmation and treatment with an assessment of outcomes and the creation of national treatment guidelines supported by a national co-ordination centre.  The law has been written in a way that ensures that as new treatments are developed the list of disorders included within the screening programme will be continuously updated.

The development was strongly supported by Dr Alberto Burlina and Dr Carlo Dionisi Vici, both present at the meeting.   Its importance for Rare Disorders was also stressed by Dr Domenica Taruscio who worked with Dr Luciano Vitozzi on the 2011 tender which described the status of newborn screening in the EU.

Representatives from Eurordis and other patient groups were also present at the meeting and supported this new national initiative.

Senator Taverna, the architect of the new legislation, spoke enthusiastically about the role of screening in health prevention and the benefits for the children affected and their families.

On behalf of ISNS, Prof Jim Bonham welcomed the new model, particularly praising the concept of structured national co-ordination from pre-screening information to testing, confirmation, treatment and the assessment of outcomes.   He stressed the importance of these key factors in delivering a successful programme and applauded the way in which politicians, patients, doctors, scientists and the media had worked closely together in Italy to achieve these goals.

It is hoped that this meeting might be a stimulus to work together within the EU to describe a model for newborn screening delivery that might be adopted by all EU member states.    In practice the provision of funding streams by the European Commission to repeat the assessment made back in 2011 and to extend this to include recommendations on the governance and conduct of screening within the EU would be a welcome development from the meeting.