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Editorial
Is the Spanish type 1 diabetes mellitus registry really necessary?
Registro español de diabetes mellitus tipo 1. ¿Es realmente necesario?
Javier Escaladaa,b,
Corresponding author
fescalada@unav.es

Corresponding author.
, Antonio Pérezc,d, Itxaso Ricae,f
a Departamento e Endocrinología y Nutrición, Clínica Universidad de Navarra, Pamplona, Spain
b Presidente de la Sociedad Española de Endocrinología y Nutrición, Spain
c Servicio de Endocrinología y Nutrición, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
d Presidente de la Sociedad Española de Diabetes, Spain
e Servicio de Endocrinología Pediátrica, Hospital Universitario de Cruces, Bilbao, Spain
f Presidente de la Sociedad Española de Endocrinología Pediátrica, Spain
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Type&#8239;1 Diabetes mellitus &#40;T1DM&#41; is currently a chronic autoimmune disease with a major socioeconomic and health impact&#46; It accounts for between 5&#37; and 10&#37; of all cases of diabetes and its incidence seems to have been increasing all around the world&#46; The current estimated incidence of T1DM in children under 15&#8239;years of age in Spain is between 11 and 15 cases per 100&#44;000 inhabitants per year&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> However&#44; there is no national registry&#44; and the data currently available on T1DM in Spain&#44; which derive from studies in the different autonomous communities using different methodologies&#44; reflect a significant regional heterogeneity and information limited to incidence and prevalence over a specific period&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">It is essential to have the most accurate information possible on the epidemiology of T1DM in Spain to identify the aetiopathogenic mechanisms of the disease and its complications&#44; as well as to develop strategies geared towards prevention&#44; improving the quality of life of people with the disease and harnessing the available health resources appropriately&#46; If we look around us&#44; it is evident that many countries have diabetes registries that were launched in response to the recommendations of the Saint Vincent Declaration to ensure quality in diabetes care&#46; Data from the International Diabetes Federation show that there has been an absolute increase in the number of countries with some kind of diabetes registry&#8212;from 23 in 2011 to 30 in 2014 &#40;out of 47&#8239;countries&#41;&#8212;&#44; although more than 83&#37; were considered to be incomplete&#44;<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> and a recent publication<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a> has analysed the status of national diabetes mellitus registries globally&#44; quantifying their data and assessing their influence on diabetes care&#46; The study identified 12 national clinical diabetes registries spread across four different continents&#44; mostly concentrated in northern Europe&#46; More specifically&#44; the registries of Sweden&#44; Finland&#44; Denmark&#44; Norway&#44; the Netherlands&#44; Germany&#44; Latvia&#44; Scotland&#44; England&#44; the United States&#44; Australia and Saudi Arabia were analysed&#44; and their databases globally comprised a total of 7&#44;181&#44;356 people with diabetes&#44; although it should be noted that they all included people with T1DM or type&#8239;2 diabetes&#46; Nevertheless&#44; the conclusion drawn is important&#44; because most of the registries were shown to improve the quality of diabetes care using the guidelines as a reference point&#46; The effects on national health policy-making were more variable and often less clear&#59; however&#44; the data collected should help to optimise healthcare system performance and to assign resources and interventions to where they are most needed&#46; The global implementation of a set of variables would improve the comparison and sharing of outcomes and treatments in clinical diabetes care&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">In this context&#44; the Spanish Society of Endocrinology and Nutrition &#40;SEEN&#41;&#44; the Spanish Diabetes Society &#40;SED&#41; and the Spanish Society of Paediatric Endocrinology &#40;SEEP&#41; recently decided to jointly launch a national T1DM registry in Spain&#44; the &#34;National T1DM patient registry&#34;&#44; with a view to gathering accurate epidemiological data and generating high-quality scientific information about T1DM&#46; A national registry would enable researchers&#44; healthcare professionals&#44; managers and policy-makers to identify trends and patterns in the incidence and prevalence of T1DM&#44; assess the impact of existing and future therapies and improve the care and quality of life of T1DM patients&#46; It could also provide a solid foundation for clinical and epidemiological research and identify potential risk factors and patients for clinical studies&#44; which could lead to new discoveries and more effective therapies&#46; Furthermore&#44; as the registries have the potential to collect large data sets that can aid decision-making&#44; it could be of great economic benefit and also act as a tool for local quality control and comparison with national treatment targets&#44; as well as assess which therapies and treatment models work in clinical practice&#44; in addition to randomised controlled trials&#46;<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">This Spanish T1DM registry will include at least clinical&#44; demographic&#44; analytical and socio-environmental data at diagnosis and throughout follow-up&#46; The longitudinal analysis of the epidemiology of T1DM&#44; as we have already indicated&#44; will make it possible to define global and partial incidences &#40;by age&#44; gender&#44; ethnicity or geographical area&#41;&#44; data related to aetiopathogenesis&#44; to evaluate the efficacy and safety of different treatments&#44; to develop new therapies and establish clinical phenotypes and genotypes that will be key to developing and applying precision medicine in the T1DM population&#46; The project will be implemented progressively in all centres in the different regions of Spain&#44; and is supported by the Juvenile Diabetes Research Foundation&#44; the International Diabetes Federation and the Instituto de Salud Carlos&#8239;III &#91;Carlos III Health Institute&#93;&#46;</p><p id="par0025" class="elsevierStylePara elsevierViewall">The SEEN&#44; SED and SEEP believe that the registry is necessary&#46; We hope that this time it will work and that the national T1DM registry will become a reality and bear its fruit in the coming years &#40;and that we will see this&#41;&#46;</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Funding</span><p id="par0030" class="elsevierStylePara elsevierViewall">We declare that there is currently no source of funding external to the scientific societies involved &#40;SEEN&#44; SED and SEEP&#41;&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Conflicts of interest</span><p id="par0035" class="elsevierStylePara elsevierViewall">We have no conflicts of interest to declare in relation to the subject matter&#46;</p></span></span>"
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ISSN: 25300180
Original language: English
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es en pt

¿Es usted profesional sanitario apto para prescribir o dispensar medicamentos?

Are you a health professional able to prescribe or dispense drugs?

Você é um profissional de saúde habilitado a prescrever ou dispensar medicamentos