Newbornscreening SMA - From Pilot Project to Nationwide Screening in Germany.


Journal

Journal of neuromuscular diseases
ISSN: 2214-3602
Titre abrégé: J Neuromuscul Dis
Pays: Netherlands
ID NLM: 101649948

Informations de publication

Date de publication:
2023
Historique:
pubmed: 5 12 2022
medline: 11 1 2023
entrez: 4 12 2022
Statut: ppublish

Résumé

Now that targeted therapies for spinal muscular atrophy are available, attempts are being made worldwide to include screening for spinal muscular atrophy in general newborn screening. In Germany, after pilot projects from 2018-2021, it was included in the general newborn screening from October 2021. To ensure a smooth transition, criteria for follow-up were developed together with key stakeholders. At the beginning of the transition to nationwide screening, false positive findings were reported in 3 patients. After optimization of the screening method in the laboratories concerned, all findings have been subsequently confirmed. On average, the first presentation to a neuromuscular center occurred on day 12 of life, and in patients with 2 or 3 SMN2 copies, therapy started on day 26 of life. Compared with the pilot project, there was no significant delay in timing.

Identifiants

pubmed: 36463459
pii: JND221577
doi: 10.3233/JND-221577
pmc: PMC9881029
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

55-65

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Auteurs

Wolfgang Müller-Felber (W)

Dr. v. Hauner Children's Hospital, Department of Pediatric Neurology and Developmental Medicine, LMU - University of Munich, Munich, Germany.

Astrid Blaschek (A)

Dr. v. Hauner Children's Hospital, Department of Pediatric Neurology and Developmental Medicine, LMU - University of Munich, Munich, Germany.

Oliver Schwartz (O)

Department of Pediatric Neurology, Muenster University Hospital, Münster, Germany.

Dieter Gläser (D)

MVZ Genetikum GmbH, Center for Human Genetics, Neu-Ulm, Germany.

Uta Nennstiel (U)

Screening Center of the Bavarian Health and Food Safety Authority, Oberschleissheim, Germany.

Inken Brockow (I)

Screening Center of the Bavarian Health and Food Safety Authority, Oberschleissheim, Germany.

Brunhilde Wirth (B)

Institute of Human Genetics, Center for Molecular Genetics Cologne and Center for Rare Diseases Cologne, University of Cologne, Cologne, Germany.

Siegfried Burggraf (S)

Labor Becker und Kollegen, Munich, Germany.

Wulf Röschinger (W)

Labor Becker und Kollegen, Munich, Germany.

Marc Becker (M)

Labor Becker und Kollegen, Munich, Germany.

Jürgen Durner (J)

Labor Becker und Kollegen, Munich, Germany.
Department of Operative/Restorative Dentistry, Periodontology and Pedodontics, Ludwig-Maximilians-Universität München, Munich, Germany.

Katja Eggermann (K)

Institute of Human Genetics, Medical Faculty, RWTH Aachen University, Aachen, Germany.

Heike Kölbel (H)

Department of Pediatric Neurology, Developmental Neurology and Social Pediatrics, University of Essen, Germany.

Christine Müller (C)

Dr. v. Hauner Children's Hospital, Department of Pediatric Neurology and Developmental Medicine, LMU - University of Munich, Munich, Germany.

Iris Hannibal (I)

Dr. v. Hauner Children's Hospital, Department of Pediatric Neurology and Developmental Medicine, LMU - University of Munich, Munich, Germany.

Bernd Olgemöller (B)

Formerly Labor Becker, Olgemöller und Kollegen, Munich, Germany.

Ulrike Schara (U)

Department of Pediatric Neurology, Developmental Neurology and Social Pediatrics, University of Essen, Germany.

Arpad von Moers (A)

Klinik für Kinder- und Jugendmedizin, Neuropädiatrie, DRK Klinikum Westend, Berlin, Germany.

Regina Trollmann (R)

Department of Pediatrics, Division of Pediatric Neurology, Friedrich-Alexander University ofErlangen-Nürnberg, Erlangen, Germany.

Jessika Johannssen (J)

University Medical Center Hamburg-Eppendorf, Department of Pediatrics, Hamburg, Germany.

Andreas Ziegler (A)

Division of Child Neurology and Metabolic Medicine, Center for Child and Adolescent Medicine, University Hospital Heidelberg, Heidelberg, Germany.

Sebahattin Cirak (S)

Department of Pediatrics, Ulm University, Ulm, Germany.

Andreas Hahn (A)

Department of Child Neurology, University Hospital, Gießen, Germany.

Maja von der Hagen (M)

Abteilung Neuropädiatrie, Medizinische Fakultät Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany.

Claudia Weiss (C)

Department of Pediatric Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany.

Gudrun Schreiber (G)

Department of Pediatric Neurology, Klinikum Kassel, Kassel, Germany.

Marina Flotats-Bastardas (M)

Department of Pediatric Neurology, University Hospital Homburg, Homburg, Germany.

Hans Hartmann (H)

Hannover Medical School, Clinic for Pediatric Kidney-, Liver- and Metabolic Diseases, OE, Hannover, Germany.

Sabine Illsinger (S)

Hannover Medical School, Clinic for Pediatric Kidney-, Liver- and Metabolic Diseases, OE, Hannover, Germany.

Astrid Pechmann (A)

Department of Neuropediatrics and Muscle Disorders, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Germany.

Veronka Horber (V)

Department of Paediatric Neurology, University Children's Hospital, Tübingen, Germany.

Jan Kirschner (J)

Department of Neuropediatrics and Muscle Disorders, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Germany.

Cornelia Köhler (C)

Department of Pediatric Neurology, University of Bochum, Bochum, Germany.

Benedikt Winter (B)

Department of Paediatric Neurology, University hospital Mannheim, Mannheim, Germany.

Johannes Friese (J)

Department of Paediatric Neurology, University hospital Bonn, Bonn, Germany.

Katharina Vill (K)

Dr. v. Hauner Children's Hospital, Department of Pediatric Neurology and Developmental Medicine, LMU - University of Munich, Munich, Germany.

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