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2019

ANUÁRIO DO HOSPITAL
DONA ESTEFÂNIA

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THE PORTUGUESE SEVERE ASTHMA REGISTRY: DEVELOPMENT, FEATURES, AND DATA SHARING POLICIES

Ana Sá-Sousa1; João Almeida Fonseca1,2,3; Ana Margarida Pereira1,2,3; Ana Ferreira1; Ana Arrobas4; AnaMendes5; Marta Drummond 6,7,8; Wanda Videira9; Tiago Costa10; Pedro Farinha10; José Soares10; Pedro Rocha10; Ana Todo-Bom11,12; Anna Sokolova13; António Costa14; Beatriz Fernandes15; Carla Chaves Loureiro16; Cecília Longo17; Cecília Pardal17; Célia Costa5; Cíntia Cruz18; Cláudia Chaves Loureiro19,20; Cristina Lopes21,22; Duarte Mesquita23; Emília Faria24; Eunice Magalhães25; Fernando Menezes26; Filipa Todo-Bom27; Francisca Carvalho5; Frederico S. Regateiro24; Helena Falcão28; Ivone Fernandes29; João Gaspar-Marques30,31; Jorge Viana24; José Ferreira32; José Manuel Silva33; Laura Simão34; Leonor Almeida6; Lígia Fernandes35; Lurdes Ferreira15; Mafalda van Zeller6,8,36; Márcia Quaresma37; Margarida Castanho26; Natália André38; Nuno Cortesão39; Paula Leiria-Pinto30,31; Paula Pinto9,40; Paula Rosa41; Pedro Carreiro-Martins30,31; Rita Gerardo42; Rui Silva43; Susana Lucas44; Teresa Almeida4; and Teresa Calvo45

1 - Center for Health Technology and Services Research (CINTESIS), Faculdade de Medicina, Universidade do Porto, Porto, Portugal
2 - Department of Community Medicine, Information, and Health Sciences (MEDCIDS), Faculdade de Medicina Universidade do Porto, Porto, Portugal
3 - Allergy Unit, Instituto & Hospital CUF Porto, Porto, Portugal
4 - Pulmonology Department, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
5 - Immunology and Allergy Department, Centro Hospitalar Lisboa Norte, EPE, Lisboa, Portugal
6 - Pulmonology Department, Centro Hospitalar de S. João, EPE, Porto, Portugal
7 - Pulmonology Department, Faculty of Medicine University of Porto, Porto, Portugal
8 - I3S Instituto de Investigação e Inovação em Saúde, Universidade do Porto, Porto, Portugal
9 - Pulmonology Department, Centro Hospitalar Lisboa Norte, EPE, Lisboa, Portugal
10 - Virtual Care, Porto, Portugal
11 - Immunoallergology Department, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
12 - Immunoallergology Department, Faculdade de Medicina, Universidade de Coimbra, Coimbra, Portugal
13 - Immunology and Allergy Department, Hospital Prof. Doutor Fernando Fonseca, EPE, Amadora, Portugal
14 - Pulmonology Department, Hospital da Senhora da Oliveira, Guimarães EPE, Guimarães, Portugal
15 - Pulmonology Department, Hospital de Braga, Braga, Portugal
16 - Department of Pediatrics, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
17 - Pulmonology Department, Hospital Prof. Doutor Fernando Fonseca, EPE, Amadora, Portugal
18 - Immunology and Allergy Department, Centro Hospital de Setúbal, EPE, Setúbal, Portugal
19 - Pulmonology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Portugal
20 - Centre of Pulmonology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal
21 - Immunology and Allergy Department, Hospital Pedro Hispano Unidade Local de Saúde Matosinhos, EPE, Matosinhos, Portugal
22 - Immunology Dpeartment, Faculdade de Medicina da Universidade do Porto, Porto, Portugal
23 - Novartis Farma-Produtos Farmacêuticos, S.A., Porto Salvo, Portugal
24 - Immunology and Allergy Department, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
25 - Pulmonology Department, Centro Hospitalar Cova da Beira, EPE, Covilhã, Portugal
26 - Pulmonology Department, Hospital Garcia de Orta, EPE, Almada, Portugal
27 - Pulmonology Department, Hospital Beatriz Ângelo, Loures, Portugal
28 - Immunology and Allergy Department, Centro Hospitalar do Porto, EPE, Porto, Portugal
29 - Pulmonology Department, Centro Hospital de Setúbal, EPE, Setúbal, Portugal
30 - Immunology and Allergy Department, Centro Hospitalar de Lisboa Central, EPE, Lisboa, Portugal
31 - CEDOC, Integrated Pathophysiological Mechanisms Research Group, Lisboa, Portugal
32 - Immunology and Allergy Department, Centro Hospitalar de Vila Nova de Gaia/Espinho, EPE, Vila Nova de Gaia, Portugal
33 - Pulmonology Department, Unidade Local de Saúde da Guarda, EPE, Guarda, Portugal
34 - Pulmonology Department, Centro Hospitalar Tâmega e Sousa, EPE, Penafiel, Portugal
35 - Pulmonology Department, Hospital Distrital Figueira da Foz, EPE, Figueira da Foz, Portugal
36 - Pulmonology Department, Faculdade de Medicina, Universidade do Porto, Porto, Portugal
37 - Department of Pediatrics, Centro Hospitalar de Tr´as-os-Montes e Alto Douro, EPE, Vila Real, Portugal
38 - Pulmonology Department, Centro Hospitalar do Oeste, Torres Vedras, Portugal
39 - Pulmonology Department, Hospital da Luz Arrábida, Vila Nova de Gaia, Portugal
40 - ISAMB, Instituto de Saúde Ambiental Faculdade de Medicina de Lisboa. Lisboa, Portugal
41 - Pulmonology Department, Hospital de Vila Franca de Xira, Vila Franca de Xira, Portugal
42 - Pulmonology Department, Centro Hospitalar de Lisboa Central, EPE, Lisboa, Portugal
43 - Immunology and Allergy Department, Centro Hospitalar de Trás-os-Montes e Alto Douro, EPE, Vila Real, Portugal
44 - Pulmonology Department, Centro Hospitalar Universitário do Algarve, Faro, Portugal
45 - Pulmonology Department, Centro Hospitalar de Trás-os-Montes e Alto Douro, EPE, Vila Real, Portugal

Publicação em versão integral em BioMed Research International, Volume 2018, Article ID 1495039

Resumo: 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 adequatemanagement of comorbidities require step 4/5 treatment according toGINA 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 asmagrave.pt. It allows prospective clinical data collection, promotes standardized care and collaborative clinical research, and may contribute to informevidence-based healthcare policies for severe asthma.