New Publication: The importance of real-life research in respiratory medicine: manifesto of the Respiratory Effectiveness Group.

For some time, respiratory research and clinicians have recognised the important role that Real-Life Research (RLR) can play in improving patient outcomes.

In the field of therapeutic research, RLR can supplement the body of knowledge that randomised controlled trials (RCTs) provide but also help fill some of the gaps that RCTs cannot address.

The Respiratory Effectiveness Group (REG) was created in 2013 to promote high-quality real-life respiratory research. REG is involved in establishing and communicating quality standards for RLR, promoting RLR projects, providing leadership and examples of excellence in RLR, offering ethical review for RLR projects, engaging all stakeholders interested in RLR and facilitating collaborative networking in this field.

To this end, REG has authored its Manifesto, putting forward the case for increased acceptance and utility of high-quality RLR in decision making and guideline development. The REG Manifesto is endorsed by the IPCRG and the WAO as well as many individual researchers and clinicians, for which REG appreciates and acknowledges.

https://erj.ersjournals.com/content/54/3/1901511

New Publication: Management of Community-Acquired Pneumonia: An Observational Study In UK Primary Care

An REG study to evaluate the management of community acquired pneumonia (CAP) in primary care was recently published in Pragmatic and Observational Research. This observational study found that despite being embedded in UK guidelines, CRB65 (Confusion, Respiratory rate, Blood pressure, age 65 or older) scores are seldom recorded in electronic medical records.

Patients with CAP between 1 January 2001 and 31 December 2016 were identified in the Optimum Patient Care Research Database (https://opcrd.co.uk/). Those managed in secondary care or without antibiotic prescription on day of diagnosis were excluded. Of the 4,734 episodes identified, CRB65 scores were only recorded in 0.4%. Given that these scores are embedded in UK CAP management and treatment guidelines, further work is required to assess feasibility and barriers to use of CRB65 scores in primary care to ensure patients with CAP are managed appropriately.

https://www.dovepress.com/management-of-community-acquired-pneumonia-an-observational-study-in-u-peer-reviewed-article-POR

The Real Life EVidence AssessmeNt Tool: RELEVANT

REG, in collaboration with the European Academy of Allergy and Clinical Immunology (EAACI), have created a new tool (RELEVANT) to aid the appraisal of real life observational research. In April 2019, two papers detailing the methodology and use of RELEVANT were published in Clinical and Translational Allergy.

The RELEVANT tool was developed through literature review and synthesis and then iterative refinement of the tool. Multiple pilots were conducted, followed by validation using selected asthma research questions for which randomised controlled trials provided limited evidence.

The RELEVANT tool enables quality appraisal of published comparative effectiveness literature. RELEVANT has two tiers of criteria; primary criteria, all of which must be met to be considered suitable for use in guideline development; and secondary criteria, which allow further evaluation of the quality of a publication. The tool will therefore be useful for guideline developers, clinicians and researchers for assessing published literature or as a publication checklist. REG is proud to advance the acceptance of real life observational research in guideline development.

RELEVANT tool: https://www.regresearchnetwork.org/relevant-tool-2/

RELEVANT publications:

https://ctajournal.biomedcentral.com/articles/10.1186/s13601-019-0256-9

https://ctajournal.biomedcentral.com/articles/10.1186/s13601-019-0255-x

Matched cohort study of therapeutic strategies to prevent preschool wheezing/asthma attacks

A recently published retrospective cohort study, supported by REG and Optimum Patient Care (OPC), has found no evidence that initiating either inhaled corticosteroids (ICS) or leukotriene receptor antagonists (LTRA) in preschool children with a history of wheeze or asthma reduces wheezing or asthma attacks.

The study, conducted on behalf of the REG Child Health Working Group, examined UK medical record data of a diverse population of preschool children with at least two previous wheezing episodes. In these children, there were no statistically significant differences in the odds of wheezing/asthma attacks between matched cohorts receiving ICS compared with short-acting β-agonists (SABA) (odds ratio: 1.01 [95% confidence intervals: 0.85-1.19]) or between those receiving LRTA compared with SABA (odds ratio: 1.28 [95% confidence intervals: 0.96-1.72]).

https://www.dovepress.com/matched-cohort-study-of-therapeutic-strategies-to-prevent-preschool-wh-peer-reviewed-fulltext-article-JAA

2018 Summer Newsletter

In this edition you can find details of our upcoming meetings at ERS, a team update, recent REG publications as well as an ISAR report and REG Working Group reports from the Summit held in Amsterdam earlier this year.

We hope you enjoy the newsletter and welcome your feedback.

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More testing for alpha-1 antitrypsin deficiency is needed in the UK

Chronic obstructive pulmonary disease (COPD) is a major cause of chronic morbidity and the third leading cause of death worldwide. Alpha-1-antitrypsin (AAT) deficiency significantly increases the risk of developing COPD. AAT deficiency (AATD) is a genetic disorder characterized by low serum levels of AAT, which at normal levels protects the lung alveoli from damage. Severe AATD can lead to pulmonary emphysema. Global guidance from the World Health Organization, European Respiratory Society and the Global Initiative for Chronic Obstructive Lung Disease recommends testing AAT levels in blood serum of all COPD patients.

In the UK, previous estimates of the prevalence of AATD are outdated and suggest that it is underdiagnosed. In May 2018, a REG study was published in the European Respiratory Journal that determined recent trends in testing and diagnosing AATD among COPD patients in the UK from 1990 to 2014. The Optimum Patient Care Research Database was used to identify patients with a diagnostic code for COPD from about 550 UK general practices. Analysis focused on those diagnosed with COPD before the age of 60 years.

The study identified over 100,000 patients with COPD, of whom over a quarter were diagnosed before 60 years of age. Between 1994 and 2013 the incidence of AATD diagnosis increased among all age groups and both genders, mostly due to an increase in new testing for AATD from around 0% in 1994 to around 1.3% in 2013. However, despite the increase in testing, still only 2.2% of COPD diagnosed before the age of 60 were ever tested for AATD in the period 1990-2014. Of those tested, 24% were diagnosed with AATD. These findings indicate that AATD remains markedly underdiagnosed in COPD patients in the UK and that more testing is needed.

  • Soriano JB, Lucas SJ, Jones R, Miravitlles M, Carter V, Small I, Price D, Mahadeva R. Trends of testing for and diagnosis of alpha-1 antitrypsin deficiency in the UK: more testing is needed. Eur Respir J. 2018 May 31. pii: 1800360.

http://erj.ersjournals.com/content/early/2018/05/10/13993003.00360-2018

2018 Abstract Prizes

During a very successful summit in Amsterdam, the following people were awarded Abstract Prizes for their submissions and presentations:

Eric van Ganse – REGABS18001: THERAPEUTIC RATIOS PREDICT ASTHMA CONTROL IN THE ASTROLAB
COHORT
Lakmini Bulathsinhala – REGABS18010: DEMOGRAPHIC AND CLINICAL CHARACTERISTICS OF PATIENTS WITH SEVERE ASTHMA WORLDWIDE
Boudewijn Dierick – REGABS18011: WORK ABSENCE IN PATIENTS WITH ASTHMA AND/OR COPD
Ronald Dandurand – REGABS18017: CHARACTERIZATION OF COMMUNITY PRACTICE COPD BY BLOOD
EOSINOPHILS
Rupert Jones – REGABS1021: DATABASE STUDIES IN UGANDA-AN OPPORTUNITY FOR GLOBAL RESEARCH
WHERE CHRONIC LUNG DISEASE MATTERS
Ronald Dandurand – REGABS18026: OSCILLOMETRY UPPER LIMIT OF NORMAL AT WORLD COPD DAY 2017

Congratulations to you all.