Abstract：
BACKGROUND:The use of tools such as disease registries poses a problem in the case of rare diseases. This study is aimed at describing the current situation concerning rare disease registries in Spain. METHODS:The information provided by two Spanish health registries directories prepared by the Spanish Health Assessment Technologies Agencies are employed, a descriptive cross-sectional study being conducted. The registries identified in these directories has been classified as: (1) "Specific rare diseases" (2) "Unspecific but with information on rare disease and (3) "Non-informative regarding rare diseases". RESULTS:The 2000 directory listed 82 registries, 15.8% of which were classified under Group 1, whilst a total of 107 registries, 16.8% in Group 1, were identified in the 2005 review. The main health registries in Group 2, by topic, were: cancer, mortality, psychiatry and nephrology. No general rare disease registries were found in the directories. CONCLUSIONS:Although few in number, health registries do exist in Spain including information on rare diseases. Areas have been identified by topic lacking registries and also information systems or registries unidentified in the sources used. Continuing efforts must be made to improve the information available on rare diseases.
journal_name
Rev Esp Salud Publicajournal_title
Revista espanola de salud publicaauthors
Zurriaga Lloréns O,Martínez García C,Arizo Luque V,Sánchez Pérez MJ,Ramos Aceitero JM,García Blasco MJ,Ferrari Arroyo MJ,Perestelo Peréz L,Ramalle Gómara E,Martínez Frías ML,Posada de la Paz M,Red REpIER.doi
10.1590/s1135-57272006000300005subject
Has Abstractpub_date
2006-05-01 00:00:00pages
249-57issue
3eissn
1135-5727issn
2173-9110journal_volume
80pub_type
杂志文章abstract：OBJECTIVE:Immune-mediated inflammatory diseases (IMID) are chronic and highly disabling diseases that share inflammatory sequences and immunological dysregulations. Considered as a disease in itself, the prevalence of IMID is virtually unknown. The aim of this study was to assess the prevalence of 10 selected UDI, incl...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2019-03-25 00:00:00
abstract：BACKGROUND:Little is known today about the characteristics of individuals diagnosed with fibromyalgia, their degree of disability and the health system response system response to this condition. The objectives of this work include: to establish the sociodemographic, clinical and psychosocial profile of male and female...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/s1135-57272005000600008
更新日期：2005-11-01 00:00:00
abstract：BACKGROUND:The displacement of populations as the result of an armed conflict generally entails a worsening of the living and health conditions of those undergoing such a displacement. This paper is aimed at analyzing the health-related needs perceived by men and women displaced by the armed conflict and their main str...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2003-03-01 00:00:00
abstract：BACKGROUND:Dance is essentially an artistic discipline, with the dancer being exposed, as in any other occupation, to occupational risk factors. This document aims at identifying the characteristics about Professional Dance and its impact on the dancer's health. METHODS:Bibliographical review of all the material index...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章,评审
doi：10.1590/s1135-57272009000400004
更新日期：2009-07-01 00:00:00
abstract：OBJECTIVE:Among the lesions produced by the professional use of the voice since 2007, the Vocal Nodules (VN) are recognized in Spain as an Occupational Disease. With the aim of promoting its notification in Navarre, the Sentinel Program was incorporated in 2013 and, with this study, we seek to verify its efficacy. MET...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2017-07-07 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 临床试验,杂志文章
doi：
更新日期：2019-04-22 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章,评审
doi：10.1590/s1135-57272008000500002
更新日期：2008-09-01 00:00:00
abstract：:Seroepidemiological surveys can be defined as seroepidemiological studies carried out in population samples to investigate immunity levels against vaccinable and not vaccinable diseases. The objective of this paper is to present the methodology and applicability of serological surveys. Problems related to seroepidemio...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/s1135-57272009000500003
更新日期：2009-09-01 00:00:00
abstract：OBJECTIVE:Terminal patients and their relatives must know their real situation, and be treated according to the principle of autonomy, to establish therapeutic objectives adapted each one, according to their needs and decisions. The objective of this study is to identify the sufficient existence of records in the Medic...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2020-05-05 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章,评审
doi：10.4321/S1135-57272014000600002
更新日期：2014-11-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/S1135-57272012000300003
更新日期：2012-05-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.4321/S1135-57272015000500003
更新日期：2015-10-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/s1135-57272004000500007
更新日期：2004-09-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/S1135-57272012000200006
更新日期：2012-03-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.4321/S1135-57272012000400002
更新日期：2012-07-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2001-09-01 00:00:00
abstract：BACKGROUND:Directive 98/8/EC harmonizes and regulates in the European market authorization and registration of biocides and establishes a period of 14 years for review of active substances. This study analyzes the most significant changes produced in the registry of biocides used as disinfectants registered since the p...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/S1135-57272011000200006
更新日期：2011-03-01 00:00:00
abstract：BACKGROUND:Anxiety, dissociative and somatoform disorders (WHO-e 300) are the second cause of Temporary Disability (TD) in Spain. This is the main reason that justifies the analysis of the variability among primary health care centers (PHC) of the Valencian Community in the prescription processes of Temporary Disabilit...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/S1135-57272012000100006
更新日期：2012-01-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/s1135-57272009000500013
更新日期：2009-09-01 00:00:00
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pub_type： 杂志文章
doi：10.4321/S1135-57272014000300002
更新日期：2014-05-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2020-01-21 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章,评审
doi：10.1590/s1135-57272008000100004
更新日期：2008-01-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.4321/S1135-57272015000100011
更新日期：2015-01-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/s1135-57272010000200007
更新日期：2010-03-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2018-05-28 00:00:00
abstract：:The pandemic influenza (H1N1) 2009 raised a number of issues, of which we address the following: Why did between 25 and 30% of severe influenza cases show no obvious risk factor? We hypothesize that an element that can contribute to the answer are host genetic risk factors involved in poor disease progression. Several...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/S1135-57272011000100004
更新日期：2011-01-01 00:00:00
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journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2020-08-27 00:00:00
abstract：BACKGROUND:In undertaking a Minimum Basic Data Set (MBDS) of hospital discharges has to be done for all hospitals. It depends on the good function of the Medical Records Archive. The objective of this study is the continuous evaluation of the quality of the Medical Records Archive via Control Diagrams statistical techn...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/S1135-57272011000400008
更新日期：2011-08-01 00:00:00
abstract：BACKGROUND:The province of Havana City, the capital and most densely populated city in Cuba, totals around 27% of the new cases of tuberculosis. This article is for the purpose of describing the distribution and trend of the tuberculosis cases rates from 1986 to 1998, by municipalities and age groups in this province. ...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：
更新日期：2000-09-01 00:00:00
abstract：BACKGROUND:The effect of the weather temperature on mortality has been studied more in depth than its effect on morbidity. In Murcia, the number of daily emergencies and the cases of heat stroke for which care is provided at the hospitals in this Region have been studied. OBJECTIVE:to evaluate the effect that the weat...
journal_title：Revista espanola de salud publica
pub_type： 杂志文章
doi：10.1590/s1135-57272008000200002
更新日期：2008-03-01 00:00:00
