A platform for collaborations in respiratory research in Sweden
Anchor: intro

Introduction

An important task for a national quality register is to provide a longitudinal and nationwide survey of the care of patients with obstructive lung diseases in order to identify inequalities, sub-optimal care and knowledge gaps. A secondary aim is research. The Swedish National Airway Register (SNAR) was initiated in 2013 and includes data on patients with asthma (both children, adolescents and adults) and chronic obstructive pulmonary disease (COPD) from primary and secondary care, as well as hospitalized COPD patients. Following a physician’s diagnosis of asthma and/or COPD and obtaining informed consent, the registrations are directly transferred from electronic medical records (EMR) or entered manually by healthcare professionals to a web-based platform supported by the Centre of Registers Västra Götaland.

A research group from the SNAR steering committee has applied for SNAR data from the Centre of Registers Västra Götaland, and further created a research database, linking data from SNAR with other Swedish national health registers. The research database gives a unique opportunity to study real-life data of patients with asthma and COPD and associations with treatment, morbidity, comorbidities and mortality and other factors of interest. By using register data from Swedish health care, the overarching aim is to characterize treatment regimens, adherence to guidelines and the burden of asthma and COPD related to morbidity, comorbidity and mortality.

In 2022 all regions in Sweden are connected to SNAR, but the clinic participation differs, with some regions having only one participating clinic whilst in other regions all clinics participates. Regions with the highest number of registrations are Stockholm, Västra Götaland, Skåne, Värmland and Gävleborg, while the most northern regions has the lowest registration rate. Nearly 90% of the data is transferred directly from the EMR, while 10% still is manually entered. Today, about 400,000 patients are included in SNAR (nearly 300,000 asthma patients, and 100,000 COPD) (Figure 1).

Figure 1. The cumulative number of patients with asthma and COPD in The Swedish National Airway Register 2014-2022. Data extracted December 2020. 

The registrations in SNAR include data about diagnoses (J44, J45), age, sex, the current level of care (primary, secondary, or inpatient care), symptom-scores (Asthma Control Test and COPD Assessment Test), smoking habits, comorbidities, spirometry examinations, blood samples (IgE, eosinophils), skin prick test, fraction of exhaled nitric oxide (FENO) and prescribed treatment (both pharmacological and non-pharmacological). The research database is further linked to registers held by the Swedish National Board of Health and Welfare as the National Patient Register (NPR), the Swedish Cause of Death Register (SCDR), the Swedish Prescribed Drug Register (SPDR) and the Medical Birth Register (MBR), and further to the Statistics Sweden Longitudinal integrated database for health insurance and labour market studies (LISA)-register, and the Swedish Intensive Care Registry (Figure 2).  

Figure 2. National registers linked with the SNAR research database.
Anchor: Main sub-projects

Main sub-projects

Anchor: The SNAR asthma children cohort

The SNAR asthma children cohort

Background

In Sweden, the prevalence of asthma among children is about 10%, and uncontrolled asthma is common, especially among girls. In SNAR, cross-sectional and longitudinal analyses can be conducted to study children with asthma in different severities of the disease, and also the transition from pediatric to adult care. Data is collected both in primary- and secondary care, and to get a deeper understanding of the annual amount of data, in 2022 almost 30 000 children with asthma were registered. Of these, about 30% had uncontrolled asthma assessed with the Asthma Control Test (ACT ≤19).

Aims

Within the SNAR children cohort, the aim is to study adherence to guidelines regarding pharmacological and non-pharmacological treatment, and to study patients with uncontrolled asthma and its associations with clinical characteristics, and morbidity. The transition from paediatric to adult healthcare will be explored, as well as factors in early life that may affect lung function development.

Group members currently working on the project

Jon R Konradsen
Caroline Stridsman
Hanna Borgström
Øyvind Martinsen
Maria Ödling


Anchor: The SNAR adult asthma cohort

The SNAR adult asthma cohort

Background

In Sweden, the prevalence of asthma among adults is about 10%, and of these 3-5% have severe asthma. In SNAR, cross-sectional and longitudinal analyses can be conducted to study patients with asthma within different severities of the disease. Data is collected both in primary- and secondary care, and to get a deeper understanding of the annual amount of data, in 2022 over 80 000 adults with asthma were registered. Of these, nearly 40% had uncontrolled asthma (ACT ≤19).

Aims

Within the SNAR adult asthma cohort, the aim is to study adherence to guidelines regarding pharmacological and non-pharmacological treatment, and to study patients with uncontrolled asthma and its associations with clinical characteristics, morbidity, comorbidity and mortality. Differences by socioeconomic status, sex, and age are also explored.

Group members currently working on the project

Caroline Stridsman
Jon Konradsen
Apostolos Bossios
Maria Ödling
Johanna Sundbaum Karlsson
Therese Sterner
Alf Tunsäter
Stina Selberg
Jörgen Syk


Anchor: The SNAR COPD cohort

The SNAR COPD cohort

Background

In Sweden, the prevalence of COPD is today about 7%. Exacerbations and comorbidities are common leading to decreased quality of life, mortality and high costs for the society. In SNAR, cross-sectional and longitudinal analyses can be conducted to study patients with COPD in different severities of the disease, and the impact of exacerbations and comorbidities. Data is collected both in primary- and secondary care, and to get a deeper understanding of the annual amount of data, in 2022 over 40 000 patients with COPD were registered. Of these, a high symptom burden, assessed with the COPD Assessment Test (CAT≥18), is present in nearly 25% of the patients in primary care, 60% in secondary care.

Aims

Within the SNAR COPD cohort, the aim is to study clinical characteristics and the associations to treatment regimens (pharmacological- and non-pharmacological), comorbidities, morbidity and mortality. Differences by socioeconomic status, sex, and age are also explored.

Group members currently working on the project

Lowie Vanfleteren
Caroline Stridsman
Anne Lindberg
Fredrik Nyberg
Oskar Wallström
Anders Andersson
Annika Lind
Johanna Sulku


Anchor: The SNAR covid-19 project

The SNAR COVID-19 project

Background

At the end of December 2019, the first cases of coronavirus disease 2019 (COVID-19) were reported from China. Since then, COVID-19 has evolved as a major worldwide health crisis. Since the start of the pandemic, healthcare resources have been prioritized for covid-19 care, and the care of patients with asthma and COPD has been highly affected.

Aims

Within the COVID-19 project, we aimed to estimate the frequency of severe COVID-19, and COVID-19-related mortality in patients with obstructive lung diseases. Further to study risk factors for severe COVID-19 among these patients. Moreover, we aim to study the COVID-19 effect on asthma and COPD patients with regard to morbidity and mortality.

Group members currently working on the project

Caroline Stridsman
Jon R Konradsen
Anne Lindberg
Fredrik Nyberg
Johanna Sundbaum Karlsson
Stina Selberg


Anchor: Investigators and study personnel

Investigators and study personnel

• Caroline Stridsman, register holder and chairman for the SNAR steering committee and current principal investigator for the SNAR research database, and for the SNAR adult asthma cohort. Umeå University, Region Norrbotten.
• Jon R Konradsen, member of the SNAR steering committee, current principal investigator for the SNAR children asthma cohort, Karolinska Institutet, Region Stockholm.
• Lowie Vanfleteren, member of the SNAR steering committee, current principal investigator for the SNAR COPD cohort. Gothenburg University, Region Västra Götaland.
• Fredrik Nyberg, member of the SNAR steering committee, Gothenburg University.
• Anne Lindberg, member of the SNAR steering committee, Umeå University.
• Ann Ekberg Jansson, member of the SNAR steering committee, Gothenburg University, Region Västra Götaland.
• Alf Tunsäter, member of the SNAR steering committee, Lund University.
• Apostolos Bossios, member of the SNAR steering committee, Karolinska Institutet, Region Stockholm.
• Jörgen Syk, member of the SNAR steering committee, Karolinska Institutet, Region Stockholm.
• Therese Sterner, member of the SNAR steering committee, Malmö University.
• Johanna Karlsson Sundbaum, Post doc, Luleå University of Technology.
• Maria Ödling, Post doc, Karolinska Institutet.
• Johanna Sulku, Post doc, Uppsala University.
• Stina Selberg, PhD student, Umeå University, Region Norrbotten.
• Oskar Wallström, PhD student, Gothenburg University, Region Västra Götaland.
• Annika Lindh, PhD student, Örebro University.
• Anders Andersson, Gothenburg University, Region Västra Götaland.
• Yvonne Sjöö, member of the SNAR steering committee and the SNAR national coordinator.
• Caddie Zhou, statistician, The Centre of Registers Västra Götaland.

Anchor: Responsible university or institution

Responsible university or institution

The Centre of Registers Västra Götaland is responsible for the Swedish National Airway register, while Region Norrbotten is the responsible institution for the SNAR research database. Anchor: Collaborators

Collaborators

The Centre of Registers Västra Götaland
The SCIFI-PEARL-study
The OLIN-studies
TEVA Sweden
AstraZeneca
Chiesi Pharma AB

Anchor: Funders

Funders

The Swedish Heart-Lung foundation
The Asthma and Allergy Association
The Swedish Heart and Lung Association
Region Norrbotten
Svensk Lungmedicinsk Förening

Anchor: How to collaborate with SNAR

How to collaborate with SNAR

Please contact any of the principal investigators below for sub-projects you are interested in. Register data from SNAR can also be applied for at Registercentrum Västra Götaland: https://registercentrum.se/in-english/apply-for-register-data/p/H1vdh0VKu

Anchor: contacts

Contact persons

Caroline Stridsman
Email: caroline.stridsman@norrbotten.se
Phone: +46 70-5093480

Jon R Konradsen
Email: jon.konradsen@regionstockholm.se

Lowie Vanfleteren
Email: lowie.vanfleteren@vgregion.se

Anchor: publications

Key publications

Stridsman C, Konradsen JR, Vanfleteren LEGW, Pedroletti C, Binnmyr J, Edfelt P, Fjällman Scärberg K, Sjöö Y, Nyberg F, Lindberg A, Tunsäter A, Ekberg-Jansson A. The Swedish National Airway Register (SNAR): development, design and utility to date. Eur Clin Respir J. 2020;7:1833412.

Karlsson Sundbaum J, Vanfleteren LEGW, Konradsen JR, Nyberg F, Ekberg-Jansson A, Stridsman C. Severe COVID-19 among patients with asthma and COPD: a report from the Swedish National Airway Register. Ther Adv Respir Dis. 2021;15:1-9.

Larsson K, Ekberg-Jansson A, Stridsman C, Hanno M, Vanfleteren LEGW. Adherence to Treatment Recommendations for Chronic Obstructive Pulmonary Disease – Results from the Swedish National Airway Register. Int J Chron Obstruct Pulmon Dis. 2021;16:909-918.

Stridsman C, Vanfleteren LEGW, Konradsen J, Axelsson Fisk S, Pedroletti C, Sjöö Y, Syk J, Sterner T, Lindberg A, Tunsäter A, Nyberg F, Ekberg-Jansson A, Sundbaum J. Predictors of severe COVID-19 in a registry-based Swedish cohort of patients with COPD. Eur Respir J. 2021;58(5)2101920.

Henoch I, Ekberg‑Jansson A, Löfdahl C-G, Strang P. Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study. BMC Palliat Care. 2021;20:130

Nyberg F, Franzén S, Lindh M, Vanfleteren L, Hammar N, Wettermark B, Sundström J, Santosa A, Björck S, Gisslén M. Swedish Covid-19 Investigation for Future Insights – A Population Epidemiology Approach Using Register Linkage (SCIFI-PEARL). Clin Epidemiol. 2021;13:649-659.

Karlsson Sundbaum, J, Konradsen JR, Vanfleteren LEGW, Axelsson Fisk S, Pedroletti C, Sjöö Y, Syk J, Sterner T, Lindberg A, Tunsäter A, Nyberg F, Ekberg-Jansson A, Stridsman C. Uncontrolled asthma predicts severe COVID-19: a report from the Swedish National Airway Register. Ther Adv Respir Dis. 2022;16:1-1

All publications are listed on the SNAR website: https://lvr.registercentrum.se/forskning/forskning/p/ByCKDgfwP.

Anchor: links

Links

WSAS – West Sweden Asthma Study at the University of Gothenburg
Krefting Research Centre