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Title: The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
Authors: Sá-Sousa, Ana
Fonseca, João Almeida
Pereira, Ana Margarida
Ferreira, Ana
Arrobas, Ana
Mendes, Ana
Drummond, Marta
Videira, Wanda
Costa, Tiago
Lourenço-Farinha, Pedro 
Soares, José
Rocha, Pedro
Todo-Bom, Ana 
Sokolova, Anna
Costa, António
Fernandes, Beatriz
Chaves Loureiro, Carla
Longo, Cecília
Pardal, Cecília
Costa, Célia
Cruz, Cíntia 
Loureiro, Cláudia Chaves 
Lopes, Cristina
Mesquita, Duarte
Faria, Emilia 
Magalhães, Eunice
Menezes, Fernando
Todo-Bom, Filipa
Carvalho, Francisca 
Regateiro, Frederico S. 
Falcão, Helena
Fernandes, Ivone
Gaspar-Marques, João
Viana, Jorge 
Ferreira, José
Silva, José Manuel
Simão, Laura
Almeida, Leonor M. 
Fernandes, Lígia
Ferreira, Lurdes
van Zeller, Mafalda
Quaresma, Márcia
Castanho, Margarida
André, Natália
Cortesão, Nuno
Leiria-Pinto, Paula
Pinto, Paula
Luzia, Rosa Paula 
Carreiro-Martins, Pedro
Gerardo, Rita
Silva, Rui
Lucas, Susana
Almeida, Teresa
Calvo, Teresa
Issue Date: 2018
Publisher: Hindawi
Project: PhD Grant (PD/BD/113665/2015) and financed by the European Social Fund and national funds of MCTES (Ministério da Ciência, Tecnologia e Ensino Superior) through FCT (Fundação para a Ciência e Tecnologia, I.P) PhD Programme Ref. PD/0003/2013-Doctoral Programme in Clinical and Health Services Research (PDICSS). 
grant from Novartis Farma-Produtos Farmacêuticos, S.A. 
Serial title, monograph or event: BioMed Research International
Volume: 2018
Abstract: The Portuguese Severe Asthma Registry (Registo de Asma Grave Portugal, RAG) was developed by an open collaborative network of asthma specialists. RAG collects data from adults and pediatric severe asthma patients that despite treatment optimization and adequate management of comorbidities require step 4/5 treatment according to GINA recommendations. In this paper, we describe the development and implementation of RAG, its features, and data sharing policies. The contents and structure of RAG were defined in a multistep consensus process. A pilot version was pretested and iteratively improved. The selection of data elements for RAG considered other severe asthma registries, aiming at characterizing the patient's clinical status whilst avoiding overloading the standard workflow of the clinical appointment. Features of RAG include automatic assessment of eligibility, easy data input, and exportable data in natural language that can be pasted directly in patients' electronic health record and security features to enable data sharing (among researchers and with other international databases) without compromising patients' confidentiality. RAG is a national web-based disease registry of severe asthma patients, available at It allows prospective clinical data collection, promotes standardized care and collaborative clinical research, and may contribute to inform evidence-based healthcare policies for severe asthma.
ISSN: 2314-6133
DOI: 10.1155/2018/1495039
Rights: openAccess
Appears in Collections:FMUC Medicina - Artigos em Revistas Internacionais

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