Respiratory Disease Registries in Spain: Fundamentals and Organization

Lara, Beatríz; Morales, P.; Blanco, Ignacio; Vendrell, Montserrat; Roldán, Javier de Gracia; Monreal, M.; Orriols, Ramón; Isidro, Isabel; Abu-Shams, K.; Escribano, Pilar; Villena, Victoria; Rodrigo, Teresa; Plá, Rafael; Garcı́a-Yuste, Mariano; Miravitlles, Marc

doi:10.1016/j.arbr.2011.04.004

Cited by 17 publications

(5 citation statements)

References 29 publications

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“…Our laboratory in Hospital Vall d'Hebron was the central laboratory of the Spanish α1-AT Deficiency Registry during the study period Lara et al 2011] and samples were referred from all over the country for determination of plasma levels, phenotyping, and genotyping, and in particular, for studying all discordant α1-AT deficiency cases (low serum concentrations, but no S or Z alleles identified) by sequencing the entire coding region of the α1-AT gene.…”

Section: Methodsmentioning

confidence: 99%

Rare alpha-1-antitrypsin variants: are they really so rare?

Rodríguez‐Frías

Miravitlles²,

Vidal³

et al. 2012

Ther Adv Respir Dis

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Alpha-1-antitrypsin (α1-AT) deficiency is mainly evaluated in the diagnostic process of chronic obstructive pulmonary disease (COPD). Around 95% of individuals with severe α1-AT deficiency carry the PI*ZZ genotype. Little is known about the epidemiology of the remaining deficient α1-AT variants, which are called 'rare' due to their low prevalence. The retrospective revision of 3511 α1-AT deficiency determinations performed in Barcelona from 1998 to 2010 detected 1.6% of cases with rare α1-AT alleles, a rate similar to those reported in other European studies. Among these variants, PI*I and PI*Mmalton represented 54% of cases. Hence, the so-called 'rare' α1-AT alleles may not be rare as has been assumed. It would be of interest to implement simple allele-specific molecular biology methods to study the most prevalent rare variants in each region. Augmentation therapy is recommended in patients with emphysema and PI*ZZ genotype, but there is little evidence regarding the implications of rare variants on therapy.

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Section: Methodsmentioning

confidence: 99%

Rare alpha-1-antitrypsin variants: are they really so rare?

Rodríguez‐Frías

Miravitlles²,

Vidal³

et al. 2012

Ther Adv Respir Dis

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“…[21] Lara et al's 2011 study of respiratory disease registries in Spain outlined a number of disease-specific registries that have lead to advancements in the management of specific respiratory conditions. [22] An opportunity therefore arises for Australian registries within these general medical conditions.…”

Section: Discussion Of Comparison To Other Studiesmentioning

confidence: 99%

Are Clinical Registries Actually Used? The Level of Medical Staff Participation in Clinical Registries, and Reporting within a Major Tertiary Teaching Hospital

Dwyer

McNeil

2016

APJHM

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Clinical Registries are established to provide a clinically credible means for monitoring and benchmarking healthcare processes and outcomes, to identify areas for improvement, and drive strategies for improving patient care. Clinical Registries are used to assess changes in clinical practice, appropriateness of care and health outcomes over time. The American Heart Association Policy Statement in April 2011 called for expanding the application for existing and future Clinical Registries, with well-designed Clinical Registry programs. Concurrently, in Australia, and similarly within the United States and United Kingdom, there has been an increased focus on performance measurement for quality and patient safety. Within Victoria, the Victorian Clinical Governance Policy Framework outlines clinical effectiveness as one of the four domains of Clinical Governance As Clinical Registries evaluate effectiveness and safety of patient care by measuring patient outcomes compared with peers, the use of Clinical Registries data to improve a health service’s quality of care seems intuitive. A mixed methods approach was utilised, involving (1) semi-structured interviews and (2) documentation audit in this study conducted at Austin Health, a major tertiary teaching hospital in North-Eastern metropolitan Melbourne, affiliated with the University of Melbourne and various research institutes within Austin LifeSciences. Although many studies have highlighted the benefits of data collected via individual Clinical Registries, [5,6] the level of voluntary medical staff participation in Clinical Registries at a health service level is yet to be established. The aim of this study was to document the level of medical staff involvement for Clinical Registries within a major tertiary teaching hospital, and the level of reporting into Quality Committees within the organisation. This study demonstrates that along with a very high level of medical staff participation in Clinical Registries, there is a lack of systematic reporting of Registries data into quality committees beyond unit level, and utilisation of such data to reflect upon practice and drive quality improvement. Abbreviations: CREPS – Centre for Excellence in Patient Safety; CSU – Clinical Services Unit; HOU – Heads of Unit; VASM – Victorian Audit of Surgical Mortality.

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“…Em epidemiologia, o conceito de Registro de Pacientes (RP) é entendido como uma base de dados que comporta informação relativa à saúde de uma determinada grupo de doentes, com possibilidade de extrapolar esses resultados para uma base populacional geral (Lara et al, 2011).…”

Section: Registro De Pacientes E Sistemas Nacionais De Registro De Paunclassified

Hemo@record: The Portuguese System for Registration of Patients with Haemophilia and Other Congenital Coagulopathies

Teixeira

Saavedra

Ferreira

et al. 2016

Atas Da 16ª Conferência Da Associação Portuguesa De Sistemas De Informação

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O presente trabalho descreve uma aplicação web desenvolvida para suportar o primeiro registro nacional de pacientes com hemofilia e outras coagulopatias congénitas em Portugal. A importância de sistemas nacionais de registro de pacientes (SnRP) no âmbito de doenças crónicas e raras, como é o caso da hemofilia, tem sido reconhecida por vários organismos a nível internacional e pelas entidades governamentais nacionais. No entanto, são várias as barreiras à criação deste tipo de sistemas, destacando-se a falta de motivação em investir num projeto que beneficia uma pequena parcela da população, característico das doenças raras. Em Portugal recentemente estabeleceram-se as condições para a criação do primeiro SnRP na área da hemofilia, concretizado através de um projeto que contou com a colaboração de um grupo de profissionais clínicos pertencentes à Associação Portuguesa de Coagulopatias Congénitas (APCC) e de um grupo de investigadores da Universidade de Aveiro. Atualmente a solução tecnológica, já desenvolvida e testada, encontra-se instalada no data center da Universidade de Aveiro na sua versão operacional, e está a ser usada pelos clínicos dos diferentes Centros de Tratamento de Hemofilia (CTHs) espalhados pelo país. Em termos de números, conta, neste momento, com cerca de 10% do número esperado de pessoas com hemofilia (PcH) do contexto português já introduzidos, estando-se a trabalhar no sentido de se alcançarem os 100% dessa população.

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Respiratory Disease Registries in Spain: Fundamentals and Organization

Cited by 17 publications

References 29 publications

Rare alpha-1-antitrypsin variants: are they really so rare?

Rare alpha-1-antitrypsin variants: are they really so rare?

Are Clinical Registries Actually Used? The Level of Medical Staff Participation in Clinical Registries, and Reporting within a Major Tertiary Teaching Hospital

Hemo@record: The Portuguese System for Registration of Patients with Haemophilia and Other Congenital Coagulopathies

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