Category: Our News

Current and Optimal Practices in Childhood Asthma Monitoring Among Multiple International Stakeholders

Pediatric Asthma is a chronic disease requiring regular monitoring. A recent publication by the PeARL think tank describes for the first time the range of actual monitoring practices globally and compares them with practices perceived as optimal. With 1319 health care professionals  from 88 countries participating, there was consistency both between and within different countries in pediatric asthma monitoring. Thus, e.g. visits for severe asthma in children take place every 1-4 months and last for 10'-40' in the large majority of settings. Symptoms, control, adherence to treatment, comorbidities and lung function are the top priorities for monitoring. An unmet need to intensify  between-visit monitoring, taking advantage of mHealth tools was revealed.

Pediatric Asthma in Real Life (PeARL) is a think tank set up by the Respiratory Effectiveness Group consisting of health care professionals, clinical academics, and expert patient representatives with expertise in and professional exposure to paediatric asthma. Asthma monitoring was prioritized in a previous PeARL report evaluating unaddressed clinical needs in pediatric asthma

Link to the full article:

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2804856

 

Catch up with the latest REG news and happenings in our February 2023 Newsletter

 

 

Systemic corticosteroids in asthma: A call to action from World Allergy Organization and Respiratory Effectiveness Group

This call-to-action article was authored and endorsed as a joint initiative by the Respiratory Effectiveness Group and the World Allergy Organization. The aims of the article are to review the accumulating evidence on the burden of systemic corticosteroids (SCS) on patients with asthma and provide an overview of potential strategies for implementing SCS Stewardship.

Systemic corticosteroids (SCS) are a highly effective treatment for acute exacerbations and long-term symptom control in asthma. Long-term SCS use is highly prevalent across all asthma severities, occurring in over 20% of patients with severe or uncontrolled disease globally. It is now well known that exposure to both long-term and repeated acute courses of SCS is associated with a high risk of serious adverse effects (AEs) such as osteoporosis, and metabolic and cardiovascular complications, especially when prescribed when patients are taking other corticosteroids.

Because of the extensive data available on the costly and burdensome AEs associated with SCS use and the range of treatment options now available, there is a need for healthcare providers to carefully evaluate whether the benefits of SCS outweigh the potential harms, or to adopt SCS-sparing and Stewardship strategies and consider possible alternative therapies. Development of a structured and collaborative approach to SCS Stewardship is urgently required to protect patients from the potential harm of SCS use.

https://doi.org/10.1016/j.waojou.2022.100726

 

 

 

 

Catch up with the latest REG news and happenings in our August 2022 Newsletter

 

 

REG has launched a new project to identify characteristics of ILD diagnostic practice in the post-COVID era. This global survey aims to identify features, strengths and limitations of distanced/virtual multi-disciplinary team meetings (MDTs), and open discussion on the prevalence of post-COVID fibrosis.

More information on the study, is available at:
https://www.regresearchnetwork.org/research-2/global-evaluation-of-the-interstitial-lung-disease-ild-diagnostic-pathway-in-the-post-covid-era/

Or contact Graham Lough (graham@regresearchnetwork.org).

If you work in ILD participate in MDTs, the survey will take 25 minutes of your time.

You can take the survey here:

https://regresearch.qualtrics.com/jfe/form/SV_9obv1XfEragLXWC

Please feel free to forward this email/survey link to any colleagues who are working in ILD diagnostic pathway.

 

 

REG is pleased to announce the resumption of in-person Working Group meetings taking place at ERS this year. Meetings are open to everyone (collaborators and supporters) so please come along to those of particular interest to find out about REG and its research projects and re-connect with many of your colleagues. Online participation to the meetings will also be possible.

Saturday 3rd September

09:00 – 10:00        Allergy Working Group
10:00 – 11:00          ILD/IPF Working Group
11:00 – 12:00          Environment, Epidemiology and Airways WG
12:00 – 13:00          COPD Working Group
13:00 – 14:00          Biomarkers & Severe Asthma Working Group
14:00 – 15:00          Technologies Working Group
15:00 – 16:00          Database and Coding Working Group
16:00 – 17:00          Adherence Working Group
17:00 – 18:00          Cost Effectiveness Working Group
18:00 – 19:00          Child Health Working Group

All meetings will be held at:
Hotel SB Plaza Europa,  Carrer de les Ciències, 11, 13, 08908 L'Hospitalet de Llobregat, Barcelona
(The hotel is located close to the ERS Congress venue, FIRA Barcelona Gran Via congress centre, Hall 8 which is a 5 minute walk away)

Hotel Location and access
By metro:
Line L9 sud. Metro stop: Fira
Just 900 meters from the hotel (10 minute walk)

Line L10 sud. Metro stop: Ciutat de la Justícia
900 meters from the hotel

Line 10 sud. Metro stop: Foneria
700 meters from the hotel (8 minute walk)

By train
Station: Ildefons Cerdà
Just 350 meters from the hotel (5 minutes walk)

Catch up with the latest REG news and happenings in our February 2022 Newsletter

 

 

REG is happy to announce the Scientific Programme of REG Summit 2022

The programme of the Summit includes a variety of interactive and informative sessions.

17 - 19 March 2022.

More information is available on the REG Summit website www.regsummit2022.org

 

 

 

 

 

 

Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO): identifying a core dataset for asthma and COPD studies

TORPEDO (Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes) was a collaborative project between the Global Alliance for Chronic Disease (GACD) and the Respiratory Effectiveness Group (REG). The study used a modified Delphi design to develop checklists of the optimum and minimum required variables for asthma and chronic obstructive pulmonary disease (COPD) research studies.

Initially a panel of 22 REG experts generated a list of 224 variables they considered optimum for respiratory studies. In phase 2 a panel of 64 participants from across the GACD and REG networks completed an online survey to select the minimum variables that they felt were required for any respiratory study. In the final phase 34 members of the panel completed voting to select a set of minimum variables required for specific study designs.

The panel reached a consensus on 13 variables for retrospective asthma studies and 34 for prospective asthma studies. For COPD studies, 16 variables were selected for retrospective studies and 37 for prospective studies. Gender, exacerbations and patient-reported outcomes were the only variables with 100% agreement for both asthma and COPD studies.

The proposed list of minimally required variables generated by this research will aid the assessment of current data sources for their utility in asthma and COPD studies and standardization of data collection. This will improve research efficiency, replicability and transparency and facilitate the sharing, merging and comparison of datasets.

https://doi.org/10.1101/2021.10.14.21264843

 

 

 

 

 

 

Catch up with the latest REG news and happenings in our  October 2021 Newsletter