Newborn screening (NBS) is an important part of public healthcare systems in many countries. The provision of information to parents about NBS is now recognised as an integral part of the screening process. Informing parents on all aspects of screening helps to achieve the benefits, promote trust and foster support for NBS. Therefore, policies and guidelines should exist to govern how the information about NBS is provided to parents, taking into account evidence-based best practices. The purpose of our survey was to explore whether any legally binding provisions, guidelines or recommendations existed pertaining to the provision of information about NBS to parents across Europe. Questions were designed to determine the regulatory process of when, by whom and how parents should be informed about screening. Twenty-seven countries participated in the survey. The results indicated that most countries had some sort of legal framework or guidelines for the provision of information to parents. However, only 37% indicated that the provision of information was required prenatally. The majority of countries were verbally informing parents with the aid of written materials postnatally, just prior to sample collection. Information was provided by a neonatologist, midwife or nurse. A website dedicated to NBS was available for 67% of countries and 89% had written materials about NBS for parents. The survey showed that there is a lack of harmonisation among European countries in the provision of information about NBS and emphasised the need for more comprehensive guidelines at the European level.

Centre for Health Protection National Institute for Public Health and the Environment Bilthoven The Netherlands

Centre for inherited metabolic diseases Karolinska University Hospital Solna Sweden

Centre for Preventive Paediatrics Limassol Cyprus

Children's University Hospital Banska Bystrica Slovakia

Children's University Hospital Riga Riga Latvia

Department of Paediatrics and Adolescent Medicine Medical University of Vienna Vienna Austria

Department of Paediatrics and Inherited Metabolic Disorders Charles University 1st Faculty of Medicine and General University Hospital Prague Czech Republic

Department of Paediatrics University of Szeged Szeged Hungary

Division of Pharmacy Diagnostics and Genetics Sheffield Children's NHS Foundation Trust Sheffiled UK

Hospices Civils de Lyon Lyon France

Institute Child Health Athens Greece

Institute for Medical Humanities Charles University 1st Faculty of Medicine Prague Czech Republic

Institute of Mother and Child Warsaw Poland

International Society for Neonatal Screening Office Bilthoven The Netherlands

Laboratoire National de Santé Dudelange Luxembourg

Mater Dei Hospital Imsida Malta

Meyer Children's University Hospital Tuscany Florence Italy

National Children's Hospital OHMATDYT Kiev Ukraine

National Health Programs Management Unit of National Institute for Mother and Child Health Bucharest Romania

National Institute of Health Dr Ricardo Jorge Porto Portugal

Norwegian National Unit for Newborn Screening Oslo University Hospital Oslo Norway

RIVM Centre for Population Screening Bilthoven The Netherlands

Scientific centre of Gynaecology Obstetrics and Perinatology Almaty Kazakhstan

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

Statens Serum Institute Copenhagen Denmark

Tartu University Hospital Tartu Estonia

UMC University Children's Hospital Ljubljana Slovenia

University Children's Hospital Zurich Zurich Switzerland

University Hospital Centre Zagreb Croatia

Vilnius University Hospital Santaros Klinikos Vilnius Lithuania

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Informing Parents about Newborn Screening: A European Comparison Study