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.
Derivação pericardioperitoneal no tratamento de derrames pericárdicos em doentes neoplásicos Pericardioperitoneal shunt in the treatment of pericardial effusions in neoplasic patients Recebido para publicação/received for publication: 05.09.22 Aceite para publicação/accepted for publication: 06.10.20
Neoplasia-related pericardial effusions are a frequent finding and pose diagnostic and therapeutic challenges. Although they appear in the context of an underlying neoplastic disease, 50% of these effusions have a benign etiology; they are indirectly caused by the tumor. The remaining cases (neoplastic pericardial effusions - NPE) derive from extension of tu- moral disease to the epi and/or pericardium and have, therefore, a worst prognosis. Despite several treatment options, the lack of appropriate guidelines difficults the evaluation of their efficacy and safety. Pericardioperitoneal shunt (PPS) is a surgical pericardial drainage method, which has demonstrated its usefulness in the management of NPE. At the CHC, this procedure is performed under videoassisted toracoscopic guidance (VATS). During the last 8 years, 18 patients have been submitted to this therapeutic option, which proved to be safe, efficacious and with low morbimortality rates.
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