International Journal of Neonatal Screening (Mar 2021)
Neonatal Screening in Europe Revisited: An ISNS Perspective on the Current State and Developments Since 2010
- J. Gerard Loeber,
- Dimitris Platis,
- Rolf H. Zetterström,
- Shlomo Almashanu,
- François Boemer,
- James R. Bonham,
- Patricia Borde,
- Ian Brincat,
- David Cheillan,
- Eugenie Dekkers,
- Dobry Dimitrov,
- Ralph Fingerhut,
- Leifur Franzson,
- Urh Groselj,
- David Hougaard,
- Maria Knapkova,
- Mirjana Kocova,
- Vjosa Kotori,
- Viktor Kozich,
- Anastasiia Kremezna,
- Riikka Kurkijärvi,
- Giancarlo La Marca,
- Ruth Mikelsaar,
- Tatjana Milenkovic,
- Vyacheslav Mitkin,
- Florentina Moldovanu,
- Uta Ceglarek,
- Loretta O'Grady,
- Mariusz Oltarzewski,
- Rolf D. Pettersen,
- Danijela Ramadza,
- Damilya Salimbayeva,
- Mira Samardzic,
- Markhabo Shamsiddinova,
- Jurgita Songailiené,
- Ildiko Szatmari,
- Nazi Tabatadze,
- Basak Tezel,
- Alma Toromanovic,
- Irina Tovmasyan,
- Natalia Usurelu,
- Parsla Vevere,
- Laura Vilarinho,
- Marios Vogazianos,
- Raquel Yahyaoui,
- Maximilian Zeyda,
- Peter C.J.I. Schielen
Affiliations
- J. Gerard Loeber
- International Society for Neonatal Screening (ISNS) Office, 3721CK Bilthoven, The Netherlands
- Dimitris Platis
- Department of Newborn Screening, Institute of Child Health, 11527 Athens, Greece
- Rolf H. Zetterström
- Centre for Inherited Metabolic Diseases, Karolinska University Hospital and Department of Molecular Medicine and Surgery, Karolinska Institute, SE-17 76 Stockholm, Sweden
- Shlomo Almashanu
- Newborn Screening Laboratories, Tel-HaShomer, 52621 Ramat Gan, Israel
- François Boemer
- CHU-Domaine du Sart Tilman, 4000 Liège, Belgium
- James R. Bonham
- Sheffield Children’s NHS Foundation Trust, Sheffield S10 2TH, UK
- Patricia Borde
- Laboratoire National de Santé, 3555 Dudelange, Luxembourg
- Ian Brincat
- Mater Dei Hospital, Tal-Qroqq Msida, MSD2090 Msida, Malta
- David Cheillan
- Groupement Hospitalier Est, 69500 Bron, France
- Eugenie Dekkers
- Centre for Population Research, National Institue for Public Health and the Environment (RIVM), 3720BA Bilthoven, The Netherlands
- Dobry Dimitrov
- National Genetic Laboratory, Hospital Maichin Dom, 1431 Sofia, Bulgaria
- Ralph Fingerhut
- Neonatal Screening Laboratory, Children’s Hospital, CH-8032 Zürich, Switzerland
- Leifur Franzson
- Department Genetics & Molecular Medicine, Landspitali, Reykjavik 108, Iceland
- Urh Groselj
- University Children’s Hospital, 1000 Ljubljana, Slovenia
- David Hougaard
- Staten Serum Institute, 2300 Copenhagen, Denmark
- Maria Knapkova
- Newborn Screening Centre, Banska Bystrica 97401, Slovakia
- Mirjana Kocova
- Medical Faculty, 1000 Skopje, North Macedonia
- Vjosa Kotori
- University Clinical Centre, Pristina 10000, Kosovo
- Viktor Kozich
- Department of Pediatrics and Inherited Metabolic Disorders, Charles University-First Faculty of Medicine and General University Hospital, Prague 12808, Czech Republic
- Anastasiia Kremezna
- Clinical and Diagnostic Center “Pharmbiotest”, LLC 93000 Rubizhne, Ukraine
- Riikka Kurkijärvi
- Newborn Screening Centre, Turku University Hospital, 20521 Turku, Finland
- Giancarlo La Marca
- Meyer Hospital, 50139 Florence, Italy
- Ruth Mikelsaar
- Medical Faculty, University of Tartu, 50411 Tart, Estonia
- Tatjana Milenkovic
- Mother and Child Health Care Institute of Serbia, Belgrade 11070, Serbia
- Vyacheslav Mitkin
- Neonatal Screening Center, 115580 Moscow, Russia
- Florentina Moldovanu
- National Institute for Mother and Child Health, 050474 Bucharest, Romania
- Uta Ceglarek
- University Clinic, 04103 Leipzig, Germany
- Loretta O'Grady
- Newborn Blood Spot Screening Laboratory, Dublin 1, Ireland
- Mariusz Oltarzewski
- Institute of Mother and Child, 01-211 Warsaw, Poland
- Rolf D. Pettersen
- Norwegian National Unit for Newborn Screening, 0424 Oslo, Norway
- Danijela Ramadza
- University Hospital Medical Centre Zagreb, 10000 Zagreb, Croatia
- Damilya Salimbayeva
- Republican Scientific Centre for Gynaecology and Perinatology, Almaty 050020, Kazakhstan
- Mira Samardzic
- Institute for Sick Children, 81000 Podgorica, Montenegro
- Markhabo Shamsiddinova
- Republican Center Mother and Child Screening, Tashkent 100164, Uzbekistan
- Jurgita Songailiené
- Centre for Medical Genetics, 08661 Vilnius, Lithuania
- Ildiko Szatmari
- Children’s Clinic, 1083 Budapest, Hungary
- Nazi Tabatadze
- NeugoGenetic and Metabolic Center, Tbilisi 0194, Georgia
- Basak Tezel
- Child and Adolescent Health Department, 06430 Ankara, Turkey
- Alma Toromanovic
- Department of Pediatrics, University Clinical Centre, Tuzla 75000, Bosnia and Herzegovina
- Irina Tovmasyan
- Arbes Health Care Centre, Yerevan 0014, Armenia
- Natalia Usurelu
- National Centre Health and Reproductive & Medical Genetics, 2062 Chisinau, Moldova
- Parsla Vevere
- Children’s University Hospital, 1004 Riga, Latvia
- Laura Vilarinho
- National Institute of Health, 4000-055 Porto, Portugal
- Marios Vogazianos
- Center for Preventive Paediatrics, 3022 Limassol, Cyprus
- Raquel Yahyaoui
- Málaga Regional University Hospital. Institute of Biomedical Research IBIMA, 29011 Málaga, Spain
- Maximilian Zeyda
- Department of Pediatrics and Adolescent Medicine, 1090 Vienna, Austria
- Peter C.J.I. Schielen
- International Society for Neonatal Screening (ISNS) Office, 3721CK Bilthoven, The Netherlands
- DOI
- https://doi.org/10.3390/ijns7010015
- Journal volume & issue
-
Vol. 7,
no. 1
p. 15
Abstract
Neonatal screening (NBS) was initiated in Europe during the 1960s with the screening for phenylketonuria. The panel of screened disorders (“conditions”) then gradually expanded, with a boost in the late 1990s with the introduction of tandem mass spectrometry (MS/MS), making it possible to screen for 40–50 conditions using a single blood spot. The most recent additions to screening programmes (screening for cystic fibrosis, severe combined immunodeficiency and spinal muscular atrophy) were assisted by or realised through the introduction of molecular technologies. For this survey, we collected data from 51 European countries. We report the developments between 2010 and 2020 and highlight the achievements reached with the progress made in this period. We also identify areas where further progress can be made, mainly by exchanging knowledge and learning from experiences in neighbouring countries. Between 2010 and 2020, most NBS programmes in geographical Europe matured considerably, both in terms of methodology (modernised) and with regard to the panel of conditions screened (expanded). These developments indicate that more collaboration in Europe through European organisations is gaining momentum. We can only accomplish the timely detection of newborn infants potentially suffering from one of the many rare diseases and take appropriate action by working together.
Keywords
- neonatal screening
- newborn screening
- congenital metabolic disorders
- rare diseases
- dried blood spot screening
- congenital endocrine disorders