What is the Respiratory Effectiveness Group?
The Respiratory Effectiveness Group is a not-for-profit, global network of respiratory clinicians, researchers, outcomes researchers and allied health professionals with a shared interest in real-world research.
Founded in early 2013 by Professor David Price (Professor of Primary Care Respiratory Medicine, University of Aberdeen, UK), the REG is an investigator-led collaborative that works to raise the quality and profile of real-world research (observational studies and pragmatically designed clinical trials) by standardising methodologies, setting standards and conducting research to address evidence gaps and unmet research needs.
The REG has 14 working groups with different speciality focus. Each group identifies key unmet research needs and opportunities for real-life research in their field. The REG operational team then aim to develop and secure funding (from individual or groups of commercial and-or non-commercial funding avenues) to deliver the investigator initiated studies.
The REG’s ILD Working Group was established in 2015 and is led by Prof. Luca Richeldi.
Am I eligible to participate?
All centres who diagnose patients with ILD are eligible.
Please see the description of the questions below (What questions will be asked?) to assess if you are the best person at your centre to complete the questionnaire.
How long is the questionnaire?
The questionnaire should take approximately 20 minutes to complete.
What questions will be asked?
The questions ask participants about:
- Themselves (non-identifiable information; details to confirm they are eligible and suitable to complete the questionnaire)
- The geographic location and specialism of the centre
- The centre’s ILD case load and case mix
- The ILD diagnostic process
- Access to licensed IPF therapies at the centre
- Interest in participating in a future ILD diagnostic agreement
Can I start the questionnaire and return to it later?
If necessary, participants will be able to save their responses and return later.
What if someone else at my centre has already taken part?
This is not a problem. We can identify multiple responses from one centre and only the most complete will be included in the final analysis.
What is the history of the study?
The study was proposed by the REG ILD Working Group in May 2015 to improve understanding of existing diagnostic practice for future guideline development and to inform an IPF diagnostic accuracy and agreement study.
Funding has been raised by the REG and the e-questionnaire has been developed by the REG drawing on prior work in this area, under the leadership of the co-PIs and in collaboration with the REG ILD Working Group (see FAQs for a list of members).
What languages will the questionnaire be available in?
The questionnaire has been developed in English and will be available in English for all participating centre. To avoid biasing results by prohibiting inclusion of non-English speakers, translations is available in:
Translations have been developed in collaboration with the appointed national leads to ensure the terms and language remains relevant and accurate.
Select your required language using the drop down menu on the right hand side of the page.
What questionnaire tool is being used for the questionnaire and is it stable and secure?
The questionnaire will be hosted via an e-questionnaire platform licensed from Qualtrics Ltd (https://www.qualtrics.com). The Qualtrics platform is widely used for academic research and commercial market research and provides secure data capture, platform stability, simple data analytics and easy data export to enable more in-depth external data analysis.
Is there any payment for participation?
No – given the scope of the study (i.e. global, uncapped number of participating centres), participants will not be paid for participation. They will be acknowledged on this study webpage and be invited participate in the follow-up agreement study, should they wish.
Has the questionnaire approved by an ethics committee?
The questionnaire does not ask for any patient-level or sensitive data.
It has been reviewed and approved by the University of Southampton Faculty of Medicine Ethics Committee (ID: 21016) in the United Kingdom (research affiliation of Principal Investigator, Luca Richeldi).
What about confidentiality?
All information gathered from the study will remain confidential. Individual personal identity of respondents will not be requested (nor disclosed).
Responses will be aggregated with other data and curated within a research database that will be analysed for the explicit purposes of the study as outlined above.
Site-specific data will only be available to authorised persons, defined as the Principal Investigators (PI) on the REG ILD research team and members of the REG ILD research team. Requests to view the data from outside the REG ILD research team will be considered on a case-by-case basis via an application to the REG.
Who are the members of the REG ILD Steering Committee?
The members of the REG ILD Working Group who make up the study’s steering committee are listed below:
|Luca Richeldi||UK||University of Southampton, UK|
|Simon Walsh||UK||Kings College Hospital, London|
|Fernando J. Martinez||USA||Weill Cornell Medical College, New York|
|Kevin Flaherty||USA||University of Michigan, Ann Arbor, MI|
|Jeffrey Myers||USA||University of Michigan, Ann Arbor, MI|
|Ganesh Raghu||USA||University of Washington, Washington|
|Kevin Brown||USA||National Jewish Health, Denver, CO|
|Harold Collard||USA||University of California, San Francisco, CA|
|Kaissa DeBoer||USA||University of California, San Francisco, CA|
|Martin Kolb||Canada||McMaster University, Hamilton, ON|
|Christopher Ryerson||Canada||University of British Columbia, Vancouver, BC|
|Francesco Bonella||Germany||University of Duisburg-Essen, Essen|
|Jürgen Behr||Germany||University of Munich, Munich|
|Vincent Cottin||France||Lyon University Hospitals, Lyon|
|Bruno Crestani||France||Hopital Bichat Paris, France|
|Toby Maher||UK||National Heart and Lung Institute, Imperial College, London|
|Athol U. Wells||UK||Royal Brompton Hospital, London|
|Ian Glaspole||Australia||Alfred Health, Melbourne|
|Tamera Corte||Australia||University of Sydney, Sydney|
|Manuela Funke||Switzerland||University Hospital Bern, Bern|
|Thomas Geiser||Switzerland||University Hospital Bern, Bern|
|Paolo Spagnolo||Italy||University of Padua, Padua, Italy|
|Paola Rottoli||Italy||Le Scotte Hospital, Siena|
|Carlo Vancheri||Italy||University of Catania, Catania|
|Maria Molina Molina, Pilar Rivera; Lurdes Planas||Spain||Hospital Universitario de Bellvitge, Barcelona, Spain|
|Claudia Valenzuela||Spain||Hospital Universitario de La Princesa Madrid|
|Demosthenes Bouros||Greece||University of Athens, Athens|
|Katerina M. Antoniou||Greece||Department of Thoracic Medicine, Medical School, University of Crete|
|Karolinska University Hospital, Solna, Sweden
Karolinska University Hospital, Solna, Sweden
|Aileen David Wang & Camillo Roa||Philippines||University of the Philippines-Philippine General Hospital, Manila, Philippines|
|Antonio Morais||Portugal||Centro Hospitalar de São João, Porto, Portuga|
|Arata Azuma||Japan||Nippon Medical School, Tokyo|
|Mariano Mazzei||Argentina||University of Buenos Aires, Buenos Aires|
|Silvia Quadrelli||Argentina||Hospital Británico de Buenos Aires, Argentina|
|Moises Selman||Mexico||Instituto Nacional de Enfermedades Respiratorias|