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Valcárcel-Nazco et al. Rare Dis Orphan Drugs J 2023;2:19 Rare Disease and
DOI: 10.20517/rdodj.2023.14
Orphan Drugs Journal

Review Open Access

Development of newborn screening policies in Spain
2003-2022: what do we actually need to reach an

agreement?

Cristina Valcárcel-Nazco 1,2,3,4 , Lidia García-Pérez 1,2,3,4 , Renata Linertová 1,2,3,4 , Carmen Guirado-Fuentes 1,2,3,4 ,
6
3,5
3,5
Aránzazu Hernández-Yumar 1,2,3 , Lucinda Paz-Valiñas , Paula Cantero-Muñoz , Manuel Posada , Pedro
Serrano-Aguilar 1,3
1
Servicio de Evaluación del Servicio Canario de la Salud (SESCS), Santa Cruz de Tenerife 38109, Spain.
2
Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Las Palmas de Gran Canaria 35019, Spain.
3
Red Española de Agencias de Evaluación de Tecnologías Sanitarias y Prestaciones del Sistema Nacional de Salud (RedETS),
Madrid 28071, Spain.
4
Red de Investigación en Cronicidad, Atención Primaria y Prevención y Promoción de la Salud (RICAPPS), Madrid 28071, Spain.
5
Unidade de Asesoramento Científico-técnico (Avalia-t). Axencia Galega de Coñecemento en Saúde (ACIS), Santiago de
Compostela 15707, Spain.
6
Instituto de Investigación en Enfermedades Raras (IIER), Instituto de Salud Carlos III (ISCIII), Madrid 28071, Spain.
Correspondence to: Cristina Valcárcel-Nazco, Servicio de Evaluación del Servicio Canario de la Salud (SESCS), Centro de Salud
San Isidro-El Chorrillo, El Rosario, Santa Cruz de Tenerife 38109, Spain. E-mail: cristina.valcarcelnazco@sescs.es
How to cite this article: Valcárcel-Nazco C, García-Pérez L, Linertová R, Guirado-Fuentes C, Hernández-Yumar A, Paz-Valiñas L,
Cantero-Muñoz P, Posada M, Serrano-Aguilar P. Development of newborn screening policies in Spain 2003-2022: what do we
actually need to reach an agreement? Rare Dis Orphan Drugs J 2023;2:19. https://dx.doi.org/10.20517/rdodj.2023.14
Received: 5 Jun 2023 First Decision: 21 Jul 2023 Revised: 29 Aug 2023 Accepted: 7 Sep 2023 Published: 7 Oct 2023

Academic Editors: Daniel Scherman, Chiuhui Mary Wang Copy Editor: Dan Zhang Production Editor: Dan Zhang

Abstract
Newborn screening (NBS) for inherited disorders is recognized as an essential public health intervention to
improve health outcomes in the newborn population. The implementation of an NBS programme requires an
evaluation of effectiveness, safety, cost-effectiveness, feasibility, and budget impact. Determining which of the
known disorders should be included in NBS programmes is a public health policy challenge. In this context,
economic evaluation aims to contribute to the sustainability of public health systems, but the appropriate
economic evaluation framework for these interventions is still unclear. Existing NBS programmes vary widely in the
number and type of disorders screened, even among the most developed European countries, despite the fact that
the core criteria for guiding policy decision-making are standard. In Spain, where delivery of NBS programmes is
marked by heterogeneity between regions, guidelines based on the best available scientific evidence are being
established in order to achieve standardization of NBS policies and programmes at a national level. This paper

© The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0
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adaptation, distribution and reproduction in any medium or format, for any purpose, even commercially, as
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