Browsing by Author "Sokolova, Anna"
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- Optimizing the use of systemic corticosteroids in severe asthma (ROSA II project): a national Delphi consensus studyPublication . Marques, João; Duarte-Ramos, Filipa; Ferreira, Manuel Branco; Lima, Ricardo; Lopes, Cristina; Sokolova, Anna; Tonin, Fernanda Stumpf; Loureiro, Cláudia ChavesAlthough the prevalence of severe asthma is not high (5-10% of patients), it is responsible for a large part of the overall disease burden and costs (50-60% of total costs), especially if the condition remains uncontrolled (which occurs in around 40% of cases). Currently, for patients without disease control or presenting frequent exacerbations despite optimal therapy, add-on treatments, traditionally long-acting anticholinergics, oral corticosteroids (OCS) or biologic agents (monoclonal antibodies) are recommended.2 Nonetheless, the long-term use of oral/systemic corticosteroids (CS) is significantly associated with adverse effects, acute and chronic complications that may decrease health-related quality of life and worsen prognosis, thus requiring additional monitoring and management. Conversely, target therapies (i.e., omalizumab, mepolizumab, reslizumab, benralizumab and more recently, dupilumab) have been developed grounded on the different phenotypes and endotypes of severe asthma, and are gradually reducing the reliance on OCS (i.e., greater specificity for achieving disease control by reducing the risk of exacerbations and requirements for rescue medication and OCS, with limited adverse events).
- The portuguese severe asthma registry : development, features, and data sharing policiesPublication . Sousa, Ana Sá; 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; Loureiro, Carla Chaves; 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; Marques, João Gaspar; 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; Pinto, Paula Leiria; Pinto, Paula; Rosa, Paula; Martins, Pedro Carreiro; Gerardo, Rita; Silva, Rui; Lucas, Susana; Almeida, Teresa; Calvo, TeresaThe 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.