A platform for collaborations in respiratory research in Sweden
The DISCOVERY study is based on patients with respiratory insufficiency and obstructive sleep apnea reported to the National Quality registries Swedevox and SESAR with linked data to other Swedish national health registers.
The DISCOVERY study is a population-based longitudinal study on patients with long-term oxygen therapy (LTOT) since 1987, long-term mechanical ventilation (LTMV) since 1996 and Continuous airway pressure (CPAP) therapy due to obstructive sleep apnea (OSA) since 2010, reported to the Swedish Quality Registry of Respiratory Failure (Swedevox) and patients with OSA reported to the Swedish Sleep Apnea Registry (SESAR). Recently, also OSA patients reported to the diagnosis-based OSA registry SESAR since 2010 were added to the cohort. SESAR is a diagnosis-based registry and includes not only patients with CPAP but also those with other treatment modalities such as oral device (OD) treatment, Upper Airway Surgery (UAS), and/or weight reduction. Since 2015, there has been an automatic transmission of data on OSA-patients on CPAP between the two registries. The DISCOVERY cohort also includes a population-based control group identified from Statistics Sweden’s Living Conditions Surveys (ULF/SILC), which consists of a random selection of approximately 6000 people between the ages of 16 and 74 years in Sweden, made every year since 1987 (Figure 1).
The database is under constant expansion. We have recently applied to also include data from the Swedish Motor Neuron Disease Registry to get better insights into patients with amyotrophic lateral sclerosis and respiratory insufficiency, the Swedish Medical Birth Registry to better characterize patients with bronchopulmonary dysplasia and the National Register of Municipal Support and Service for Persons with Certain Functional Impairment to strengthen health economic analyses in different patient groups.
By linking the study population to other quality- and mandatory governmental registries, a database has been created with world-unique opportunities to study disease trajectories, risk factors for development of morbidity, hospitalisations and mortality in patients with respiratory insufficiency with LTOT and/or LTMV, and OSA.
Region Blekinge.
Anchor: CollaboratorsThe collaboration with the other quality registers included in the DISCOVERY study takes place in close cooperation with their representatives (Figure 1). The DISCOVERY network involves most universities and several other regions in Sweden and constantly expands (Figure 2).
We welcome potential collaborators. Don’t hesitate to contact any of the contact persons below.
Anchor: contactsAndreas Palm, andreas.palm@medsci.uu.se (LTMV or general issues)
Magnus Ekström, pmekstrom@gmail.com (LTOT)
Ludger Grote, ludger.grote@lungall.gu.se (OSA)
Palm A, Ågren K, Grote L, Ljunggren M, Midgren B, Sundh J, Theorell-Haglöw J, Ekström M. Course of DISease In patients reported to the Swedish CPAP Oxygen and VEntilator RegistrY (DISCOVERY) with population-based controls. BMJ Open 2020: 10(11): e040396.
Palm A, Grote L, Theorell-Haglöw J, Ljunggren M, Sundh J, Midgren B, Ekström M. Socioeconomic Factors and Adherence to CPAP: The Population-Based Course of Disease in Patients Reported to the Swedish CPAP Oxygen and Ventilator Registry Study. Chest. 2021 Oct;160(4).
Palm A, Ekström M. Hypoxemia severity and survival in ILD and COPD on long-term oxygen therapy – The population-based DISCOVERY study. Respiratory medicine. 2021;189:106659.
Palm A, Grote L, Ekström M, Ljunggren M. Health risks related to polyurethane foam degradation in CPAP devices used for sleep apnoea treatment. European Respiratory Journal. 2022;59(5).
Bengtsson C, Grote L, Ljunggren M, Ekström M, Palm A. Nasal polyposis is a risk factor for nonadherence to CPAP treatment in sleep apnea: the population-based DISCOVERY study. J Clin Sleep Med. 2023 Mar 1;19(3):573-579. doi: 10.5664/jcsm.10390. PMID: 36546358; PMCID: PMC9978419.
Palm A, Theorell-Haglöw J, Isakson J, Ljunggren M, Sundh J, Ekström MP, Grote L. Association between obstructive sleep apnoea and cancer: a cross-sectional, population-based study of the DISCOVERY cohort. BMJ Open. 2023 Mar 3;13(3):e064501. doi: 10.1136/bmjopen-2022-064501. PMID: 36868588; PMCID: PMC9990651.
Svensson M, Ekström M, Sundh J, Ljunggren M, Grote L, Palm A. Adherence to CPAP therapy in Down syndrome: the population-based DISCOVERY study. J Clin Sleep Med. 2023 Mar 1;19(3):453-458. doi: 10.5664/jcsm.10364. PMID: 36458740; PMCID: PMC9978440.
Björklund F, Palm A, Gorani JA, Ahmadi Z, Sundh J, Theorell-Haglöw J, et al. Breathlessness and exercise performance to predict mortality in long-term oxygen therapy – The population-based DISCOVERY study. Respiratory medicine. 2023;216:107306.
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