Key points from the REG AGM held in Amsterdam in September 2015

1. DATE: Saturday September 26th
VENUE: Wyndham Apollo Hotel, Amsterdam
MEETING ROOM: Boardroom
TIME: 08:00 – 09:30
CHAIR: David Price
REG ANNUAL GENERAL
MEETING 2015

2. Agenda

3. David Price, Alison Chisholm & Thao Le
Looking Back: 2013/15 Summary
& Highlights

4. The Respiratory Effectiveness Group (REG)
• Founded in October 2012 by
David Price, Professor of
Primary Care Respiratory
Medicine at the University of
Aberdeen.
• Recognised the growing importance of real-life research and the
need for respiratory experts around the world to come together to:
o De-fragment practice
o Set best practice quality standards
o Set a unified agenda
for future ethical and meaningful real-life research.

5. A step-wise approach
Step 1
Step 2
Step 3

6. Step 1: Network & Structure (I)
• Council: global scope with
regional & speciality
drivers
• Working Groups: activity
drivers with speciality
focus. Conceive, develop
and implement REG
projects and activities.
• External alliances &
strategic partnerships
with organizations and
societies with overlapping
goals.
Council representing different
geographical regions, societies and
speciality areas. Activities supported by
12 Working Groups & 3 Committees
REG Collaborators Group
Clinical, Academic & Research
Collaborators & Supporters / Partner
Organisations
Global / Strategic Partners
EAACI, ENCePP, IPCRG
270 Collaborators
38 Countries
12 Working Groups
3 Committees

7. Supporting Organisations:
2012/13
Step 1: Network & Structure (II)
2015

8. Words from our supporters
“REG is…integral to our evidence planning...”
“Evidence-based medicine will not come into being until
real-world evidence is brought into consideration.”
“I wish we had a similar organisation leveraging and
advocating the value of real-world evidence (RWE) for all
other therapeutic areas...”

9. Step 1: Network & Structure (III)
Council: strategic advisors
Overseen by an
independent Oversight
Committee
Collaborator Council Role
Nick May Oversight Committee
Trevor Lambert Oversight Committee
John Haughney Executive Committee — Clinical Governance Lead
David Price Executive Committee — Chairman & Scientific Lead
Leif Bjermer
Society Liaison — EAACI; Biomarkers Working Group
Lead
John Blakey Technologies Working Group Lead
Guy Brusselle Society Liaison — ERS
Jon Campbell Cost Effectiveness Working Group Lead
Niels Chavannes IPCRG Society Liaison
Eric van Ganse Adherence Working Group Lead
Daryl Freeman Manuscript Review & Accreditation Committee
Peter Hellings Allergy Working Group Lead
Stephen Holgate Special Interest Lead — Strategic Alliances Lead
Elliot Israel Research Review Committee
Jerry Krishnan Society Liaison — ATS; ACOS Working Group Lead
Richard Martin
Regional Lead – North America; Small Airways Working
Group Lead
Andrew McIvor Special Interest Lead — e-Health
Marc Miravitlles
Co-Guidelines Lead (COPD); COPD Control Working
Group Lead
Nikos
Papadopoulos
Co-Guidelines Lead — Asthma / Allergy
Alberto Papi Special Interest Lead — devices
Emilio Pizzichini Regional Lead — South America
Luca Richeldi IPF/ILD Working Group Lead
Nicolas Roche Regional Lead (Europe); Quality Standards Lead
Mike Thomas Special Interest Lead — Primary Care
Katia Verhamme Database Working Group Lead
Christian Virchow Special Interest Lead — Publications
Gary Wong Regional Lead — Asia-Pacific
Stephen Turner
Child Health Working Group Lead; Manuscript Review
Committee

10. Working Groups: activity drivers
Lead Working Group / Committee
Leif Bjermer Biomarkers
John Blakey Technologies
Jon Campbell Cost Effectiveness
Eric van Ganse Adherence
Daryl Freeman Manuscript Review & Accreditation (Committees)
Peter Hellings Allergy
Elliot Israel Research Review Committee
Jerry Krishnan ACOS Working Group Lead
Richard Martin Small Airways Working Group Lead
Marc Miravitlles COPD Control Working Group Lead
Luca Richeldi IPF/ILD Working Group Lead
Nicolas Roche Quality Standards Lead
Katia Verhamme Database & Coding Validation
Stephen Turner Child Health
Step 1: Network & Structure (IV)

11. Step 1: Network & Structure (V)
ADEPT
REG

12. ADEPT convenes under REG
• The Optimum Patient Care Research Database (OPCRD) has
ethical approval for respiratory research subject to protocols
being approved by its Anonymised Data Ethics and Protocol
Transparency (ADEPT) Committee
o Chairman: Daryl Freeman
o Group Members: Dr Iain Small; Dr Stan Musgrave; Professor
Graham Davies; Dr Jane Chatworthy; Dr Delyth James
• ADEPT reviews database protocols for ethical
“appropriateness”:
o Ethical quality & “policing”

13. A step-wise approach
Step 1
Step 2
Step 3

14. Step 2: Leadership
Build a
network
Impact over time
Lead by
example
Affect change
Aim:
• To address unmet
research needs
• To demonstrate quality
standards in practice
• To build a position of
authority
• To change the field from
the inside out
• To generate the collateral
to advocate for the greater
recognition of real-life
evidence

15. Dissemination
Research
Activities “at a glance”
0
2
4
6
8
10
2013 2014 2015
0
2
4
6
8
10
2013 2014
Conference: Abstracts & Sessions
Abstracts Sessions
Build a
network
Lead by
example
Affect
change
Impact over time

16. Activities in detail: 2013/15 Report

17. Research portfolio: Year 1
Adherence
Asthma risk
predictors
Paediatric asthma
step-up
Database
endpoint validation
NRT & CV risk
COPD &
blood eos
Refractory asthma & os comorb.
Missed diagnostic opps in COPD
Risk predictor in COPD

18. REG
network
Year 1
Research Pinboard
Pre-school
asthma/wheeze
Relevance of
asthma RCTs
(UNLOCK)
Additive benefit of
abx to usual
asthma exac care
Prevalence of
comorbidities in
COPD(UNLOCK)
Delphi –
management
approaches tailored
to pt attitude
Validation of
COPD Control
Validation of COPD
risk model
Triple therapy
in COPD
Development of
short-form
EXACT
Longitudinal asthma
treatment step
algorithm
Year 2
Small Airways
Group
Smallairwaystudies
Spin-offstudies(notsmallairwayfocused)
Research portfolio: Years 1-2
Study
Prop
osal

19. REG
network
Year 1
Research Pinboard
Year 2
Small Airways
Group
Year 3
New activities driven by working groups

20. Taskforce activity summary
ACOS Adherence Allergy Biomarkers
Child
Health
COPD
Control
Cost
Effective-
ness
Databases
&
Validation
IPF/ILD
Small
Airways
Standards
Technolo-
gies
7
1
3
1 9 2
1

21. 15
13
1
1 1Non-working
group specific
Small Airways
Child Health
Adherence
COPD Control
Research Distribution, by group
6
21
2
1
3 Non-working
group specific
Small Airways
ACOS
ILD/IPF
Databases
Technologies
Active / funded Proposal/Protocols
Developed; seeking funding
n=15n=31

22. Congress Abstracts
0
2
4
6
8
10
12
14
2013 2014 2015
APSR
BTS
ESPACOM
IPSE
EACCI
RCPCH
IPCRG
ATS
ERS
n=2
n=9
n=13n=24
Year-on-year increase in number and distribution across
international congresses.

23. Publication summary
8
11
4
2
Research Reviews
Letters / Correspondence Abstract books
Published Published or in draft,
(by working group)
14
3
7
11
25
SASG Child Health Adherence
ILD/IPF Biomarkers Unassigned
n=25 n=51

24. Publications

25. Publications
2015 Publications Summary
• 5 Research papers
• (1 accepted this week: Int J COPD;
press release associated)
• 2 Reviews
• 1 Letter to the Editor
• 1 Abstract book

26. International Conference Sessions
0
1
2
3
4
5
6
7
8
9
10
2014 2015
ISPOR
APSR
WAC
ESPACOM
World Asthma Allergy
COPD Forum
EACCI
ATS
IPCRG
COPD9
Eye for Pharma
n=4
n=9
• Increase in number & international distribution
• 2016: 11 conference sessions submitted / invited to
7 international events (N & S America, Europe, Asia)
o Status: 1 accepted; 10 pending decision

28. Events in 2014: Inaugural Summit, London
REG 2014 Inaugural Summit
Date: July 2014
Location: London
Number of delegates: 70
Number of abstracts: 27
Abstract book: npj Primary
Care Respiratory Medicine.

29. Events in 2015: Rotterdam & Singapore
REG 2015 Global Summit
Date: January 2015
Rotterdam
REG 2015 Regional Summit
Date: April 2015
Singapore
Location: Rotterdam
Number of delegates: 100
Number of abstracts: 26
Abstract book: Pragmatic and
Observational Research.
Location: Singapore
Number of delegates: 50
Number of abstracts: 20

30. Working Group Events in 2015
• Rotterdam:
o 9 working group /
committee meetings
• ATS:
o Collaborators’ meeting
o 6 working group meetings
• EAACI:
o 2 working group meetings
o Adherence Expert Panel
Meeting
• ERS:
o AGM
o Council Meeting
o 12 Working Group
Meetings
o 1 Joint Committee
Meeting

31. Closing thoughts…
• Working groups are the future:
o Self supporting
o Primary (not sole) driver of research
• Need for a more formal structure with growth
• Need for succession planning…

32. John Haughney, Thao Le, Group Discussion
Looking Forward: Future Opportunities

33. Thao Le
ASTRO-LAB / REG Summit 2016

34. REG Summit 2016
• ASTRO-LAB Results
Symposium:
14th April 2016:
ASTRO-LAB
• REG Summit Dates:
15th–16th April 2016:
• Venue:
L'Embarcadère –
Lyon, France

35. REG Summit 2016: Scientific
Committee
2016 REG Summit Scientific
Committee
• Bernardino Alcázar
Navarrete
• George Christoff
• Nemr Eid
Interested in getting
involved…?
Abstract submission
opens… NOW!

36. REG/EAACI Taskforce – next steps?
• Review of the CER
asthma literature over the
last 10 years
• Focus on key PICOT
questions that looking at
“gaps” in the evidence
• Arrange Summit meetings to advocate for real-life effectiveness research:
o Guidelines developers and respiratory scientific societies.
o Respiratory journal editors
o Working in the area (STROBE/RECORD, etc.)
• Aim: presenting REG work in the area of quality criteria development for
real-life research, aiming at further increasing REG’s reputation and
establishing formal collaborations.

37. Other ideas
• National / International funding opportunities:
o Europe – Horizon 2020
o USA – PCORI
• REG’s role as an educator
• Others…?

38. Other Ideas …?