2015 ERS EVENTS

DATE: Saturday September 26th VENUE: Wyndham Apollo Hotel, AmsterdamMEETING ROOM: BoardroomTIME: 08:00 – 09:30CHAIR: David Price

REG ANNUAL GENERAL MEETING 2015

Agenda

David Price, Alison Chisholm & Thao Le

Looking Back: 2013/15 Summary & Highlights

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 standardso Set a unified agenda for future ethical and meaningful real-life research.

A step-wise approach

Step 1

Step 2Step 3

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 PartnersEAACI, ENCePP, IPCRG

270 Collaborators

38 Countries

12 Working Groups

3 Committees

Supporting Organisations:

2012/13

Step 1: Network & Structure (II)

2015

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...”

Step 1: Network & Structure (III)

Council: strategic advisors

Overseen by an independent

Oversight Committee

Working Groups: activity drivers

Step 1: Network & Structure (IV)

Step 1: Network & Structure (V)

ADEPT

REG

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) Committeeo Chairman: Daryl Freemano 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”

A step-wise approach

Step 1

Step 2Step 3

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

Dissemination

Research

Activities “at a glance”

2013 2014 20150

2

4

6

8

10

2013 20140

2

4

6

8

10

Conference: Abstracts & SessionsAbstracts Sessions

Build a network

Lead by example

Affect change

Impact over time

Activities in detail: 2013/15 Report

Research portfolio: Year 1

Adherence

Asthma risk predictors

Paediatric asthma step-up

Database endpoint validation

NRT & CV riskCOPD &

blood eosRefractory asthma & os comorb.

Missed diagnostic opps in COPD

Risk predictor in COPD

REG network

Year 1

Research Pinboard

Year 2

Small Airways Group

Sm

all a

irway

stu

dies

Spin-off studies (not sm

all airway focused)

Research portfolio: Years 1-2Study

Proposal

REG network

Year 1

Research Pinboard

Year 2

Small Airways Group

Year 3

New activities driven by working groups

Taskforce activity summary

ACOS Adherence Allergy Biomarkers Child Health

COPD Control

Cost Effective-

ness

Databases &

ValidationIPF/ILD Small

Airways Standards Technolo-gies

7

13

1 9 2

1

15

13

11 1

Non-working group specific

Small Airways

Child Health

Adherence

COPD Control

Research Distribution, by group

6

21

2

1

3Non-working group specific

Small Airways

ACOS

ILD/IPF

Databases

Technologies

Active / funded Proposal/Protocols Developed; seeking funding

n=15n=31

Congress Abstracts

2013 2014 20150

2

4

6

8

10

12

14

APSR BTSESPACOMIPSEEACCIRCPCHIPCRGATSERS

n=2

n=9

n=13n=24

Year-on-year increase in number and distribution across international congresses.

Publication summary

8

11

4

2

Research Reviews Letters / CorrespondenceAbstract books

Published Published or in draft, (by working group)

14

3

711

25

SASG Child Health Adherence ILD/IPF BiomarkersUnassigned

n=25 n=51

Publications

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

International Conference Sessions

2014 20150123456789

10 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

Events in 2014: Inaugural Summit, London

REG 2014 Inaugural SummitDate: July 2014

Location: London

Number of delegates: 70

Number of abstracts: 27

Abstract book: npj Primary

Care Respiratory Medicine.

Events in 2015: Rotterdam & SingaporeREG 2015 Global Summit

Date: January 2015Rotterdam

REG 2015 Regional SummitDate: April 2015

Singapore

Location: RotterdamNumber of delegates: 100 Number of abstracts: 26 Abstract book: Pragmatic andObservational Research.

Location: SingaporeNumber of delegates: 50 Number of abstracts: 20

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 meetingso Adherence Expert Panel

Meeting• ERS:

o AGMo Council Meetingo 12 Working Group

Meetingso 1 Joint Committee

Meeting

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…

John Haughney, Thao Le, Group Discussion

Looking Forward: Future Opportunities

Thao Le

ASTRO-LAB / REG Summit 2016

REG Summit 2016

Lyon April 2016!

• ASTRO-LAB Results Symposium:14th April 2016: ASTRO-LAB

• REG Summit Dates: 15th–16th April 2016:

• Venue: L'Embarcadère – Lyon, France

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!

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.

Other ideas

• National / International funding opportunities:o Europe – Horizon 2020o USA – PCORI

• REG’s role as an educator

• Others…?

Other Ideas …?