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

Table 2

Domains and data elements recorded in the Portuguese Severe Asthma Registry.

Patient data
Demographic data
(gender, birth of month and year, birthplace, place of residence, body mass index calculation, education years, smoking habits, occupation, family history of asthma and of
asthma-related death, personal history of respiratory infections during early childhood, environmental exposures)
Asthma care information
(age at asthma diagnosis, age at severe asthma classification, first year of specialized asthma follow-up, medical specialty of the attending physician)
Comorbidities
Atopy and Inflammation biomarkers
Atopy
(total serum IgE, allergic sensitization, type(s) of diagnostic test used to confirm allergic sensitization)
Inflammation biomarkers (FeNO, blood eosinophils, sputum eosinophils, sputum neutrophils)
Diagnostic tests
Lung function tests
(FEV1, FVC, MEF, residual volume, specific airway resistance, carbon monoxide diffusion capacity, bronchial challenge test)
Imaging
(thorax X-ray, thorax CT scan, sinus CT scan, bronchial endoscopy, bone densitometry)
Arterial blood gases
Control and Quality of Life
Asthma-related healthcare utilization due to asthma in previous 12 months (or since the last appointment, when at follow-up visit)
(number of routine primary care medical appointments, routine hospital care medical appointments, non-scheduled medical appointments, emergency service admissions,
hospitalizations, intensive care unit admissions, need for mechanical ventilation, school or labor absenteeism)
Asthma control assessment according to GINA recommendations[1]
(frequency of daytime symptoms, activity limitations due to asthma, any night awakening due to asthma, frequency of use of reliever medications for asthma, respiratory function,
number of exacerbations in last year/week)
Asthma control self-questionnaires (CARAT and external link to ACT)
Quality of life self-assessment questionnaires
(external link to quality of life self-assessment questionnaires)
Therapy
Asthma medication
(OCs, ICs, LTRAs, LABAs, SABAs, LAMAs, SAMAs, xanthines, immunosuppressors, immunotherapy, monoclonal antibodies, antibiotics, therapy adherence, inhalation technique)
Other medication
(proton pump inhibitor, anti-depressive/anxiolytics, intranasal steroids, antihistamines, long-term oxygen therapy, non-invasive ventilation)

Compulsory data elements at initial visit; compulsory data elements at follow-up.
IgE: immunoglobulin-E; FeNO: Fractional exhaled Nitric Oxide; FEV1: forced expiratory volume in the first second; FVC: forced vital capacity; MEF: midexpiratory flow; CT: computed tomography scan; CARAT: Control of Allergic Rhinitis and Asthma Test [33, 34] and ACT: Asthma Control Test [35]; OCs: Oral Corticosteroids; ICs: inhaled corticosteroids, LTRAs: Leukotriene Receptor Antagonist; LABA: Long-Acting Beta 2 Agonist; SABA: Short-Acting Beta Agonist; LAMA: Long-Acting Muscarinic Antagonist; SAMA: Short-Acting Muscarinic Antagonist.