RAG – Portuguese Severe Asthma Registry

The Portuguese Severe Asthma Registry (RAG) is a national internet-based registry of patients with moderate to severe asthma (treatment step 4 or 5 of Global Initiative for Asthma), available at asmagrave.pt.The RAG Project aims to encourage the prospective data collection using the RAG, promote the delivery of standardized care, and collaborative research nationally and internationally, contributing to the knowledge about the population with moderate to severe asthma. The researchers include specialist doctors from the Network of Specialists in Severe Asthma (REAG) and researchers from the Center for Research in Health Technologies and Services of the Faculty of Medicine of the University of Porto (CINTESIS / FMUP).

The Portuguese Severe Asthma Registry (RAG) is a national internet-based registry of patients with moderate to severe asthma, available at asmagrave.pt, after authentication. The RAG is hosted by the Center for Research in Health Technologies and Services, Faculty of Medicine University of Porto (CINTESIS / FMUP). Its development, implementation, and maintenance results from the collaboration between specialists from the Severe Asthma Specialist Network (REAG); CINTESIS / FMUP researchers; and the software development company VirtualCare.

REAG is an informal collaborative network of asthma specialists (allergists, pediatricians, pulmonologists) dedicated to improving care for patients with severe asthma in Portuguese hospitals since 2011. Recently, the need for collaborative research at a global level led to the celebration of agreements for scientific collaboration with the International Severe Asthma Registry (ISAR) and Severe Heterogeneous Asthma Research collaboration, Patient-centered (SHARP).

The RAG Project aims to encourage the prospective collection of data obtained in the clinical routine using the RAG, to promote the delivery of standardized care and collaborative clinical research nationally and internationally, contributing to the knowledge about the population with moderate to severe asthma. For dynamic use of the RAG, we anticipate the following project activities: 1) Periodic updating of the RAG’s features to facilitate its use and its integration in collaborative projects with international networks; 2) integration of data from the mobile application for patients CARATm (Self-reported Asthma Characteristics in Mobile Technologies); 3) Dissemination.

The development of the RAG was supported by an unrestricted grant from Novartis Farma-Produtos Farmacêuticos SA. National projects based on RAG are financed by unrestricted grants from AstraZeneca Produtos Farmacêuticos Lda, GlaxoSmithKline–Produtos Farmacêuticos Lda, Novartis Farma-Produtos Farmacêuticos SA. Projects within ISAR and SHARP scientific collaborative agreements are financed by these entities.

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João Almeida Fonseca | Ana Sá Sousa | Rita Amaral | Ana Margarida Pereira | Cristina Jácome | Rute Almeida | Ricardo Cruz Correia | Ana Margarida Ferreira | Pedro Marques | Tiago Costa | Pedro Farinha

REAG, SPPulmonologia, SPAIC; SPPediatria, ISAR, SHARP

www.asmagrave.pt