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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\u2019s 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\u2019 electronic health record and security features to enable data sharing (among researchers and with other international databases) without compromising patients\u2019 confidentiality. RAG is a national web-based disease registry of severe asthma patients, available at<jats:italic> asmagrave.pt<\/jats:italic>. 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.<\/jats:p>","DOI":"10.1155\/2018\/1495039","type":"journal-article","created":{"date-parts":[[2018,11,21]],"date-time":"2018-11-21T18:30:35Z","timestamp":1542825035000},"page":"1-12","source":"Crossref","is-referenced-by-count":11,"title":["The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies"],"prefix":"10.1155","volume":"2018","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9429-6863","authenticated-orcid":true,"given":"Ana","family":"S\u00e1-Sousa","sequence":"first","affiliation":[{"name":"Center for Health Technology and Services Research (CINTESIS), Faculdade de Medicina, Universidade do Porto, Porto, Portugal"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0887-8796","authenticated-orcid":true,"given":"Jo\u00e3o Almeida","family":"Fonseca","sequence":"additional","affiliation":[{"name":"Center for Health Technology and Services Research (CINTESIS), Faculdade de Medicina, Universidade do Porto, Porto, Portugal"},{"name":"Department of Community Medicine, Information, and Health Sciences (MEDCIDS), Faculdade de Medicina Universidade do Porto, Porto, Portugal"},{"name":"Allergy Unit, Instituto & Hospital CUF Porto, Porto, Portugal"}]},{"given":"Ana Margarida","family":"Pereira","sequence":"additional","affiliation":[{"name":"Center for Health Technology and Services Research (CINTESIS), Faculdade de Medicina, Universidade do Porto, Porto, Portugal"},{"name":"Department of Community Medicine, Information, and Health Sciences (MEDCIDS), Faculdade de Medicina Universidade do Porto, Porto, Portugal"},{"name":"Allergy Unit, Instituto & Hospital CUF Porto, Porto, Portugal"}]},{"given":"Ana","family":"Ferreira","sequence":"additional","affiliation":[{"name":"Center for Health Technology and Services Research (CINTESIS), Faculdade de Medicina, Universidade do Porto, Porto, Portugal"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7047-6264","authenticated-orcid":true,"given":"Ana","family":"Arrobas","sequence":"additional","affiliation":[{"name":"Pulmonology Department, Centro Hospitalar e Universit\u00e1rio de Coimbra, Coimbra, Portugal"}]},{"given":"Ana","family":"Mendes","sequence":"additional","affiliation":[{"name":"Immunology and Allergy Department, Centro Hospitalar Lisboa Norte, EPE, Lisboa, Portugal"}]},{"given":"Marta","family":"Drummond","sequence":"additional","affiliation":[{"name":"Pulmonology Department, Centro Hospitalar de S. 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