The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies

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.

Mapping Digital Public Health Interventions Among Existing Digital Technologies and Internet-Based Interventions to Maintain and Improve Population Health in Practice: Scoping Review

“…Of the 179 interventions, 8 (4%) focused only on secondary prevention, as digital screening and surveillance programs [ 48 , 61 , 153 , 161 , 171 , 194 , 201 , 219 ], and 3 (2%) improved the health of patients who were chronically ill on a tertiary prevention level [ 103 , 147 , 202 ]. In contrast, of all included 179 interventions, 10 (6%) were established for primary health care purposes only [ 49 , 67 , 79 , 109 , 124 , 172 , 178 , 186 , 210 , 212 , 228 , 229 ], 17 (9%) were designed for secondary health care through specialists or emergency use cases [ 52 , 54 , 60 , 65 , 78 , 83 , 88 , 95 , 134 , 135 , 173 - 175 , 179 , 189 , 193 , 216 ], and 5 (3%) aimed at tertiary health care in hospital settings [ 70 , 109 , 132 , 157 , 200 ]. Figure 5 gives an overview of the relative size of each target group and the addressed level of prevention, health care, or research per intervention setting.…”

Real‑life Cretan asthma registry focused on severe asthma: On behalf of ‘The Cretan registry of the use of Biologics in Severe Asthma’

“…For example, the Portuguese Severe Asthma Registry is a national web-based disease registry of adult and pediatric severe asthma patients. It collects evidence on severe asthma in Portugal and aims at improving the healthcare delivery of severe asthma and supporting collaborative research projects (23).…”

The Korean Severe Asthma Registry (KoSAR): real world research in severe asthma

“…France [46], Belgium [47], Spain [48], Portugal [49], Austria [50], Germany [51], and Russia [52], the United States [53], Korea [4], and Austalia [54], have established national registries (Table 4).…”

“…Comparisons of the characteristics and treatment of severe asthma by the SHARP showed wide variation and heterogeneity across 11 European countries [15]. A regional registry of the African Severe Asthma Project (ASAP) showed unique characteristics of severe asth- Severe Asthma Network in Italy (SANI) registry Italy SANI [45] COhort of BRonchial obstruction and Asthma (COBRA) France [46] Belgian Severe Asthma Registry (BSAR) Belgium Belgian Thoracic Society [47] Spanish Registry of Severe Asthma Spain [48] Portuguese Severe Asthma Registry Portugal REAG [49] Austrian Severe Asthma Registry Austria Austrian Severe Asthma Net (ASA-Net) [50] German Severe Asthma Registry Germany German Asthma Net [51] Russian Severe Asthma Registry (RSAR) Russia Russian Respiratory Society [52] National: North America CHRONICLE United States [53] Severe Asthma Research Program (SARP) United States [58] National: Asia-Pacific ma in East Africa (Uganda, Kenya, and Ethiopia), where only 14.0% of patients, including severe asthma patients, used ICS [56]. The International Severe Asthma Registry (ISAR) was organized to collect data from national registries for comparison across countries [57].…”