Category: Our News

The Interstitial Lung Disease Patient Pathway: From Referral to Diagnosis

We are delighted to share our latest publication, “The Interstitial Lung Disease Patient Pathway: From Referral to Diagnosis”, now available in ERJ Open Research. This study was led by REG researcher Dr. Graham Lough, alongside Principal Investigator Dr. Pilar Rivera Ortega.

The research aimed to explore and compare the ILD patient pathways across specialist and non-specialist centres, as well as between different regions. The study focussed on key areas such as referrals, caseloads, diagnostic tools, multi-disciplinary team (MDT) meeting practices, and resource availability.

The study was based on a comprehensive global survey, receiving 363 responses from ILD specialists and healthcare professionals across 64 countries. The findings highlighted significant differences in diagnostic pathways, with disparities in access to resources (such as antifibrotic therapies, clinical trials and specialist expertise) across centres and countries of varying income levels.

We extend our deepest gratitude to all collaborators and contributors who made this study possible.

 

 

 

 

 

 

 

 

 

 

 

 

Catch up with the latest REG news and happenings in our October 2024 Newsletter

 

 

Patient and provider perspectives driving inhaler choice: optimizing sustainable healthcare

We are excited to share our latest research on the priorities driving inhaler choice among healthcare professionals (HCPs) and asthma / COPD patients. Amidst growing concerns over the environmental impact of inhaler propellants, the study aimed to identify priorities when selecting inhalers for medical, non-medical, and environmental reasons. The study, involving participants from 42 countries, provides valuable insights into the balance between clinical efficacy and environmental impact in inhaler selection.

Highlights of the Study:

• Efficacy and Safety: HCPs and patients both prioritise clinical efficacy and safety when choosing inhalers, with environmental impact being a lower priority.
• Environmental Concerns: Both HCPs and patients were concerned about climate change, but clinical efficacy remained the dominant factor in inhaler choice. Both groups felt the pharmaceutical industry should take responsibility for developing eco-friendly options.
• Recycling Programs: Access to, and awareness of inhaler recycling programs is limited, indicating a need for better education and more robust recycling initiatives.

The findings highlight the necessity for informed decision-making in inhaler prescriptions, integrating both clinical needs and environmental sustainability.

Link to the full article:

https://journal.chestnet.org/article/S0012-3692(24)04577-X/fulltext

 

 

 

 

 

 

 

 

 

 

 

SAVE THE DATE!

The next REG Summit will be held on 20 - 22 March 2025, in London UK

More information will be available at www.regsummit2025.org

 

 

Recommendations for asthma monitoring in children: A PeARL document endorsed by APAPARI, EAACI, INTERASMA, REG, and WAO

Monitoring is a major component of asthma management in children. Regular monitoring allows for diagnosis confirmation, treatment optimisation, and natural history review. Numerous factors that may affect disease activity and patient well-being need to be monitored:

• Response and adherence to treatment
• Disease control
• Disease progression
• Comorbidities
• Quality of life
• Medication side-effects
• Allergen and irritant exposures
• Diet and more.

However, the prioritisation of such factors and the selection of relevant assessment tools is an unmet need. Furthermore, rapidly developing technologies promise new opportunities for closer, or even “real-time” monitoring between visits. Following an approach that included needs assessment, evidence appraisal, and Delphi consensus, the PeARL Think Tank, in collaboration with major international professional and patient organisations, has developed a set of 24 recommendations on pediatric asthma monitoring, to support healthcare professionals in decision-making and care pathway design.

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://doi.org/10.1111/pai.14129

 

 

 

 

 

 

 

 

 

Catch up with the latest REG news and happenings in our February 2024 Newsletter

 

 

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

 

 

REG @ ERS,  Milan 2023

Congratulations to Graham Lough, REG Researcher, for presenting the poster on the REG project "Role of virtual multidisciplinary team meetings in the post-COVID era: a global survey to evaluate the ILD diagnostic pathway"

 

 

 

ERS/REG Joint Session, ERS 2023, Milan 

Respiratory Effectiveness Group (REG) is pleased to announce a joint ERS/REG session which will take place on TUESDAY 12TH SEPTEMBER from 15:30 - 17:00 during the upcoming ERS congress in Milan.

The Mini Symposium is entitled Next Generation Evidence-Based Decision-Making In Respiratory Medicine.

Chairs: S. Bosnic-Anticevich, Sydney (NSW) (Australia) & N. Beydon, Paris (France)

15:30    "Real-world” evidence vs randomized controlled trials: friends or foes?
G. Canonica (Milano (MI), Italy)

15:45    The future of evidence generation using mHealth tools
H. Pinnock (Edinburgh (Edinburgh), United Kingdom)

16:00    Building registries to inform decision-making: potential and challenges
D. Price (Singapore, Singapore)

16:15    Discussion and Q&A

You will find more information in session 481 of the programme.

You are all invited to attend this very important mini symposium and learn more about the contribution of data from real-life research studies to decision-making processes including guidelines development.

We look forward to seeing you there.

 

 

 

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