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array:22 [ "pii" => "S0300289624001431" "issn" => "03002896" "doi" => "10.1016/j.arbres.2024.05.003" "estado" => "S300" "fechaPublicacion" => "2024-08-01" "aid" => "3560" "copyright" => "SEPAR" "copyrightAnyo" => "2024" "documento" => "simple-article" "crossmark" => 1 "subdocumento" => "edi" "cita" => "Arch Bronconeumol. 2024;60:461-2" "abierto" => array:3 [ "ES" => false "ES2" => false "LATM" => false ] "gratuito" => false "lecturas" => array:1 [ "total" => 0 ] "itemSiguiente" => array:18 [ "pii" => "S0300289624001765" "issn" => "03002896" "doi" => "10.1016/j.arbres.2024.05.015" "estado" => "S300" "fechaPublicacion" => "2024-08-01" "aid" => "3573" "copyright" => "SEPAR" "documento" => "simple-article" "crossmark" => 1 "subdocumento" => "edi" "cita" => "Arch Bronconeumol. 2024;60:463-5" "abierto" => array:3 [ "ES" => false "ES2" => false "LATM" => false ] "gratuito" => false "lecturas" => array:1 [ "total" => 0 ] "en" => array:9 [ "idiomaDefecto" => true "cabecera" => "<span class="elsevierStyleTextfn">Editorial</span>" "titulo" => "The Relevance of REMAP-ILD for Ibero-American Countries: A Randomized Embedded Multifactorial Adaptive Platform (REMAP) Trial in the Field of Interstitial Lung Diseases (ILDs)" "tienePdf" => "en" "tieneTextoCompleto" => "en" "paginas" => array:1 [ 0 => array:2 [ "paginaInicial" => "463" "paginaFinal" => "465" ] ] "contieneTextoCompleto" => array:1 [ "en" => true ] "contienePdf" => array:1 [ "en" => true ] "autores" => array:1 [ 0 => array:2 [ "autoresLista" => "Leticia Kawano-Dourado, Maria Molina-Molina, Jacobo Sellares, Juan I. Enghelmayer" "autores" => array:4 [ 0 => array:2 [ "nombre" => "Leticia" "apellidos" => "Kawano-Dourado" ] 1 => array:2 [ "nombre" => "Maria" "apellidos" => "Molina-Molina" ] 2 => array:2 [ "nombre" => "Jacobo" "apellidos" => "Sellares" ] 3 => array:2 [ "nombre" => "Juan I." "apellidos" => "Enghelmayer" ] ] ] ] ] "idiomaDefecto" => "en" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S0300289624001765?idApp=UINPBA00003Z" "url" => "/03002896/0000006000000008/v1_202408020536/S0300289624001765/v1_202408020536/en/main.assets" ] "en" => array:11 [ "idiomaDefecto" => true "cabecera" => "<span class="elsevierStyleTextfn">Editorial</span>" "titulo" => "Implementation of the Spanish Paediatric Bronchiectasis Registry (Child-BEAR-es Registry)" "tieneTextoCompleto" => true "paginas" => array:1 [ 0 => array:2 [ "paginaInicial" => "461" "paginaFinal" => "462" ] ] "autores" => array:1 [ 0 => array:4 [ "autoresLista" => "Laura Garriga-Grimau, Verónica Sanz-Santiago, Antonio Moreno-Galdó" "autores" => array:3 [ 0 => array:3 [ "nombre" => "Laura" "apellidos" => "Garriga-Grimau" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff0005" ] ] ] 1 => array:3 [ "nombre" => "Verónica" "apellidos" => "Sanz-Santiago" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "aff0025" ] ] ] 2 => array:4 [ "nombre" => "Antonio" "apellidos" => "Moreno-Galdó" "email" => array:1 [ 0 => "antonio.moreno@vallhebron.cat" ] "referencia" => array:3 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff0005" ] 1 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "aff0020" ] 2 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">*</span>" "identificador" => "cor0005" ] ] ] ] "afiliaciones" => array:3 [ 0 => array:3 [ "entidad" => "Paediatric Pulmonology Section, Department of Paediatrics, Hospital Universitari Vall d’Hebron, Vall d’Hebron Barcelona Hospital Campus, Universitat Autònoma de Barcelona, Spain" "etiqueta" => "a" "identificador" => "aff0005" ] 1 => array:3 [ "entidad" => "Paediatric Pulmonology Section, Hospital Universitario Infantil Niño Jesús, Madrid, Spain" "etiqueta" => "b" "identificador" => "aff0025" ] 2 => array:3 [ "entidad" => "Centro de Investigación Biomédica en Red (CIBER) de Enfermedades Raras (CIBERER), Instituto de Salud Carlos III, Madrid, Spain" "etiqueta" => "c" "identificador" => "aff0020" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "Corresponding author." ] ] ] ] "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Childhood bronchiectasis is defined as a clinical syndrome characterized by persistent or recurrent episodes of chronic wet or productive cough and the presence of abnormal bronchial dilatation on chest high-resolution computed tomography (HRCT) with increased broncho-arterial ratio using paediatric data (abnormal when >0.8).<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">1</span></a> Although the adult definition includes irreversible dilatation of the bronchial lumen,<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">2</span></a> paediatric data have consistently shown that radiographic bronchiectasis, especially when mild and cylindrical, is reversible with early diagnosis and optimal treatment in until 40% of children.<a class="elsevierStyleCrossRefs" href="#bib0090"><span class="elsevierStyleSup">3,4</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Bronchiectasis is the common denominator of numerous aetiologies, all characterized by failed mucus clearance, chronic bacterial infection, and inflammation. Other than cystic fibrosis, the main aetiologies in children are postinfectious, immunodeficiencies, primary ciliary dyskinesia, aspiration, congenital malformations, and obstructive airway lesions. The prevalence of idiopathic bronchiectasis is still high, between 18 and 55%.<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">1,5</span></a> While the basics of treatment, improving airway clearance or controlling infections, are the same, irrespective of the underlying cause, there are specific treatments for some aetiologies, and others will have genetic implications for the family.<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">6</span></a> A precision medicine approach is increasingly possible, and for cases of bronchiectasis without a treatable cause, phenotypes and endotypes may facilitate the recognition of problems and related pathophysiological mechanisms that indicate treatable traits.<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">7</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Only two decades ago, no patient registries or guidelines on bronchiectasis existed, and this disease's knowledge was limited. The Spanish Society of Pneumology and Thoracic Surgery (SEPAR) promoted the world's first adult national bronchiectasis registry in 2002, which was followed in 2015 by the Computerized Registry of Bronchiectasis (RIBRON), which is collecting cross-sectional and prospective data.<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">8,9</span></a> Together with the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC),<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">10</span></a> these adult registries have made significant contributions to understanding better the natural history of bronchiectasis and various dimensions of the disease, including comorbidities, aetiological, clinical–functional, pathophysiological, diagnostic, microbiological, nutritional, prognostic and therapeutic aspects.<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">9</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">However, insufficient worldwide data exists on paediatric bronchiectasis. Bronchiectasis in children is considered an understudied and underdiagnosed syndrome requiring more attention from the medical community to ensure the correct diagnostic approach and effective treatment.<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">11</span></a> Although there seem to be geographical variations, there is hardly any published Spanish paediatric data regarding its prevalence and incidence in children. Monteagudo et al. described the prevalence and incidence of bronchiectasis in primary care in 2012 in Catalonia. They found a prevalence of 36.2 cases per 10,000 inhabitants and an incidence of 4.81 cases per 10,000 inhabitants, noting that prevalence and incidence rose with age, being lower than 5/10,000 and 1/10,000 in <14 years.<a class="elsevierStyleCrossRef" href="#bib0135"><span class="elsevierStyleSup">12</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">Early childhood factors are mediators of future lung disease, poorer lung function and premature mortality in adults. Proper childhood attention is important for reducing adult lung disease. King et al. reported a high proportion of adult patients with onset of symptoms during infancy, and these patients had more severe disease and worse prognosis than those whose symptoms begin in adult life.<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">13</span></a> Therefore, the profile of bronchiectasis in children must be studied further to enable its prompt recognition and improved management.<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">11</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">International guidelines exist for managing bronchiectasis in children, including the European Respiratory Society guidelines.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">14</span></a> Children's Bronchiectasis Education, Advocacy and Research Network (Child-BEAR-Net) is a European Respiratory Society (ERS) Clinical Research Collaboration whose overall aim is to improve the knowledge about paediatric bronchiectasis and the quality of life of children and their families. They have elaborated quality standards of care, clinical and research priorities, the definition of bronchiectasis exacerbations for clinical practice and for clinical trials, and a bronchiectasis action management plan, all of them through an international point of view.<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">15</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">Currently, there are no Spanish guidelines for paediatric bronchiectasis in our country, mainly due to the lack of a proper characterization of our population. It is essential to describe our population and understand its specificities while also considering the functioning of our national healthcare system and its referral process. Describing our population may be the first step towards creating these resources at a national level.</p><p id="par0040" class="elsevierStylePara elsevierViewall">Child-BEAR-Net has promoted the creation of an International Paediatric Bronchiectasis Registry (Child-BEAR-Net Registry). Before this, the Australasian Bronchiectasis Registry was the only bronchiectasis registry that included children. The registry aims to evaluate the underlying aetiology, treatments, and outcomes, assess long-term outcomes that are important to patients, providers, and other decision-makers, and facilitate patient recruitment for clinical studies. It will also be very important to link children's data with adult-based registries to understand the importance of continuity of care throughout life and the impact of early interventions in adult life.</p><p id="par0045" class="elsevierStylePara elsevierViewall">Every country that participates in the Child-BEAR-Net Registry can create its national registry using a standard structure. Information collected can be merged, allowing the study of clinical and medical practices among countries. It is important that every country has its own registry, as there may be differences among countries in forms of presentations, etiological spectrum, and management.<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">8</span></a></p><p id="par0050" class="elsevierStylePara elsevierViewall">We have created the Spanish Paediatric Bronchiectasis Registry (Child-BEAR-es Registry) to provide a tool for generating this needed information. The Child-BEAR-es Registry is part of the Child-BEAR-Net Registry,<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">15</span></a> sharing the same structure and agreeing to data transfer.</p><p id="par0055" class="elsevierStylePara elsevierViewall">Establishing this national registry will help gather data on the epidemiology, aetiology, morbidities, symptoms, diagnosis, and management of paediatric bronchiectasis in Spain. It will enable us to determine the prevalence and incidence of this syndrome and enhance the knowledge of its particularities within our country. In addition, analysing the annual follow-up can help us identify clinical predictors and monitor improvements and deficiencies in the standard of care; furthermore, it will allow us to identify the needs of our paediatric bronchiectasis patients. The registry also establishes a framework for future research projects at a national level and collaborations at an international level.</p><p id="par0060" class="elsevierStylePara elsevierViewall">This project was promoted jointly by SEPAR and the Spanish Society of Paediatric Pulmonology (SENP) and has been created on SEPAR's REDCap platform. The inclusion criteria for this registry are patients aged between 0 and 17 years and diagnosed with bronchiectasis and whose informed consent has been obtained. Patients with a history of lung or heart transplant or those diagnosed with cystic fibrosis are excluded. The registry will include cross-sectional and prospective data; all Spanish centres are invited to collaborate. Our goal is to involve all centres, regardless of their complexity level, to obtain a characterization of the population that is as similar as possible to the reality in Spain. The initial acceptance has been exciting, with positive feedback. Today, 40 Spanish centres are willing to participate in the registry.</p><p id="par0065" class="elsevierStylePara elsevierViewall">We hope that the Spanish Paediatric Bronchiectasis Registry will be as successful as the previous Spanish bronchiectasis registries in providing evidence that improves the care of our children and adolescents.</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Funding</span><p id="par0070" class="elsevierStylePara elsevierViewall">There are no funders for this article.</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Conflict of Interests</span><p id="par0075" class="elsevierStylePara elsevierViewall">AM-G has received fees for lectures from Abbvie, Sanofi-Pasteur, Janssen and Astra-Zeneca and fees for participation in Advisory Boards sponsored by AbbVie, Sanofi-Pasteur and Astra-Zeneca. VS-S has received fees for lectures from GlaxoSmithKline and Vertex and fees for participation in Advisory Boards sponsored by Novartis. LG-G states that she has no conflict of interests.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:3 [ 0 => array:2 [ "identificador" => "sec0005" "titulo" => "Funding" ] 1 => array:2 [ "identificador" => "sec0010" "titulo" => "Conflict of Interests" ] 2 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0015" "bibliografiaReferencia" => array:15 [ 0 => array:3 [ "identificador" => "bib0080" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Bronchiectasis in children: diagnosis and treatment" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:3 [ 0 => "A.B. Chang" 1 => "A. 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