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.
Highlights
Severe asthma has been defined as asthma which requires treatment with high dose inhaled corticosteroids plus a second controller, to prevent it from becoming “uncontrolled” or asthma which remains “uncontrolled” despite this therapy [1].To improve care, a better understanding of the etiology, burden and management patterns of severe asthma is needed
Monoclonal antibodies targeting immunoglobulin-E (IgE) and interleukin-5 are currently available and new biologics are under development
We describe the development and implementation of RAG, its features, and data sharing policies
Summary
A better understanding of the etiology, burden and management patterns of severe asthma is needed. The management of severe asthma is challenging and involves treatment of comorbidities, medication adherence, allergens exposure avoidance, among others. It is not easy to choose between the biologics to be the first-choice treatment, and head-to-head comparison studies between them do not exist [4]. A trial involving the direct comparison of two or more treatments is a pressing needed, but it may never be carried out [4]. Clinical observational studies of real-world large patient populations should contribute to the knowledge on how to select the best biologic treatment for an individual patient
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