The Portuguese Severe Asthma Registry

Development, Features, and Data Sharing Policies

Ana Sá-Sousa, João Almeida Fonseca, Ana Margarida Pereira, Ana Ferreira, Ana Arrobas, Ana Mendes, Marta Drummond, Wanda Videira, Tiago Costa, Pedro Farinha, José Soares, Pedro Rocha, Ana Todo-Bom, Anna Sokolova, António Costa, Beatriz Fernandes, Carla Chaves Loureiro, Cecília Longo, Cecília Pardal, Célia Costa & 34 others Cíntia Cruz, Cláudia Chaves Loureiro, Cristina Lopes, Duarte Mesquita, Emília Faria, Eunice Magalhães, Fernando Menezes, Filipa Todo-Bom, Francisca Carvalho, Frederico S. Regateiro, Helena Falcão, Ivone Fernandes, João Gaspar-Marques, Jorge Viana, José Ferreira, José Manuel Silva, Laura Simão, Leonor Almeida, Lígia Fernandes, Lurdes Ferreira, Mafalda Van Zeller, Márcia Quaresma, Margarida Castanho, Natália André, Nuno Cortesão, Paula Leiria-Pinto, Paula Pinto, Paula Rosa, Pedro Carreiro-Martins, Rita Gerardo, Rui Silva, Susana Lucas, Teresa Almeida, Teresa Calvo

Research output: Contribution to journalArticle

1 Citation (Scopus)
1 Downloads (Pure)

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 asmagrave.pt. 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.

Original languageEnglish
Article number1495039
JournalBioMed Research International
Volume2018
DOIs
Publication statusPublished - 2018

Fingerprint

Pediatrics
Information Dissemination
Registries
Asthma
Health
Portugal
Workflow
Electronic Health Records
Evidence-Based Practice
Confidentiality
Comorbidity
Consensus
Appointments and Schedules
Language
Research Personnel
Databases
Therapeutics
Research

Cite this

Sá-Sousa, A., Fonseca, J. A., Pereira, A. M., Ferreira, A., Arrobas, A., Mendes, A., ... Calvo, T. (2018). The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies. BioMed Research International, 2018, [1495039]. https://doi.org/10.1155/2018/1495039
Sá-Sousa, Ana ; Fonseca, João Almeida ; Pereira, Ana Margarida ; Ferreira, Ana ; Arrobas, Ana ; Mendes, Ana ; Drummond, Marta ; Videira, Wanda ; Costa, Tiago ; 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, Emília ; 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 ; Fernandes, Lígia ; Ferreira, Lurdes ; Van Zeller, Mafalda ; Quaresma, Márcia ; Castanho, Margarida ; André, Natália ; Cortesão, Nuno ; Leiria-Pinto, Paula ; Pinto, Paula ; Rosa, Paula ; Carreiro-Martins, Pedro ; Gerardo, Rita ; Silva, Rui ; Lucas, Susana ; Almeida, Teresa ; Calvo, Teresa. / The Portuguese Severe Asthma Registry : Development, Features, and Data Sharing Policies. In: BioMed Research International. 2018 ; Vol. 2018.
@article{ea58a2b29e3a499b8f77b3e485441dda,
title = "The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies",
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 asmagrave.pt. 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.",
author = "Ana S{\'a}-Sousa and Fonseca, {Jo{\~a}o Almeida} and Pereira, {Ana Margarida} and Ana Ferreira and Ana Arrobas and Ana Mendes and Marta Drummond and Wanda Videira and Tiago Costa and Pedro Farinha and Jos{\'e} Soares and Pedro Rocha and Ana Todo-Bom and Anna Sokolova and Ant{\'o}nio Costa and Beatriz Fernandes and {Chaves Loureiro}, Carla and Cec{\'i}lia Longo and Cec{\'i}lia Pardal and C{\'e}lia Costa and C{\'i}ntia Cruz and Loureiro, {Cl{\'a}udia Chaves} and Cristina Lopes and Duarte Mesquita and Em{\'i}lia Faria and Eunice Magalh{\~a}es and Fernando Menezes and Filipa Todo-Bom and Francisca Carvalho and Regateiro, {Frederico S.} and Helena Falc{\~a}o and Ivone Fernandes and Jo{\~a}o Gaspar-Marques and Jorge Viana and Jos{\'e} Ferreira and Silva, {Jos{\'e} Manuel} and Laura Sim{\~a}o and Leonor Almeida and L{\'i}gia Fernandes and Lurdes Ferreira and {Van Zeller}, Mafalda and M{\'a}rcia Quaresma and Margarida Castanho and Nat{\'a}lia Andr{\'e} and Nuno Cortes{\~a}o and Paula Leiria-Pinto and Paula Pinto and Paula Rosa and Pedro Carreiro-Martins and Rita Gerardo and Rui Silva and Susana Lucas and Teresa Almeida and Teresa Calvo",
year = "2018",
doi = "10.1155/2018/1495039",
language = "English",
volume = "2018",
journal = "BioMed Research International",
issn = "2314-6133",
publisher = "HINDAWI PUBLISHING CORP",

}

Sá-Sousa, A, Fonseca, JA, Pereira, AM, Ferreira, A, Arrobas, A, Mendes, A, Drummond, M, Videira, W, Costa, T, Farinha, P, Soares, J, Rocha, P, Todo-Bom, A, Sokolova, A, Costa, A, Fernandes, B, Chaves Loureiro, C, Longo, C, Pardal, C, Costa, C, Cruz, C, Loureiro, CC, Lopes, C, Mesquita, D, Faria, E, Magalhães, E, Menezes, F, Todo-Bom, F, Carvalho, F, Regateiro, FS, Falcão, H, Fernandes, I, Gaspar-Marques, J, Viana, J, Ferreira, J, Silva, JM, Simão, L, Almeida, L, Fernandes, L, Ferreira, L, Van Zeller, M, Quaresma, M, Castanho, M, André, N, Cortesão, N, Leiria-Pinto, P, Pinto, P, Rosa, P, Carreiro-Martins, P, Gerardo, R, Silva, R, Lucas, S, Almeida, T & Calvo, T 2018, 'The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies', BioMed Research International, vol. 2018, 1495039. https://doi.org/10.1155/2018/1495039

The Portuguese Severe Asthma Registry : Development, Features, and Data Sharing Policies. / Sá-Sousa, Ana; Fonseca, João Almeida; Pereira, Ana Margarida; Ferreira, Ana; Arrobas, Ana; Mendes, Ana; Drummond, Marta; Videira, Wanda; Costa, Tiago; 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, Emília; 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; Fernandes, Lígia; Ferreira, Lurdes; Van Zeller, Mafalda; Quaresma, Márcia; Castanho, Margarida; André, Natália; Cortesão, Nuno; Leiria-Pinto, Paula; Pinto, Paula; Rosa, Paula; Carreiro-Martins, Pedro; Gerardo, Rita; Silva, Rui; Lucas, Susana; Almeida, Teresa; Calvo, Teresa.

In: BioMed Research International, Vol. 2018, 1495039, 2018.

Research output: Contribution to journalArticle

TY - JOUR

T1 - The Portuguese Severe Asthma Registry

T2 - Development, Features, and Data Sharing Policies

AU - Sá-Sousa, Ana

AU - Fonseca, João Almeida

AU - Pereira, Ana Margarida

AU - Ferreira, Ana

AU - Arrobas, Ana

AU - Mendes, Ana

AU - Drummond, Marta

AU - Videira, Wanda

AU - Costa, Tiago

AU - Farinha, Pedro

AU - Soares, José

AU - Rocha, Pedro

AU - Todo-Bom, Ana

AU - Sokolova, Anna

AU - Costa, António

AU - Fernandes, Beatriz

AU - Chaves Loureiro, Carla

AU - Longo, Cecília

AU - Pardal, Cecília

AU - Costa, Célia

AU - Cruz, Cíntia

AU - Loureiro, Cláudia Chaves

AU - Lopes, Cristina

AU - Mesquita, Duarte

AU - Faria, Emília

AU - Magalhães, Eunice

AU - Menezes, Fernando

AU - Todo-Bom, Filipa

AU - Carvalho, Francisca

AU - Regateiro, Frederico S.

AU - Falcão, Helena

AU - Fernandes, Ivone

AU - Gaspar-Marques, João

AU - Viana, Jorge

AU - Ferreira, José

AU - Silva, José Manuel

AU - Simão, Laura

AU - Almeida, Leonor

AU - Fernandes, Lígia

AU - Ferreira, Lurdes

AU - Van Zeller, Mafalda

AU - Quaresma, Márcia

AU - Castanho, Margarida

AU - André, Natália

AU - Cortesão, Nuno

AU - Leiria-Pinto, Paula

AU - Pinto, Paula

AU - Rosa, Paula

AU - Carreiro-Martins, Pedro

AU - Gerardo, Rita

AU - Silva, Rui

AU - Lucas, Susana

AU - Almeida, Teresa

AU - Calvo, Teresa

PY - 2018

Y1 - 2018

N2 - 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 asmagrave.pt. 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.

AB - 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 asmagrave.pt. 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.

UR - http://www.scopus.com/inward/record.url?scp=85058335902&partnerID=8YFLogxK

U2 - 10.1155/2018/1495039

DO - 10.1155/2018/1495039

M3 - Article

VL - 2018

JO - BioMed Research International

JF - BioMed Research International

SN - 2314-6133

M1 - 1495039

ER -