Where have we got to?
REG, the first few months: Alison Chisholm
Initial wish
“Set up a new initiative
that will raise the
quality and profile of
real-life (respiratory)
research across the
research, political and
public arenas”
• Set up an independent social enterprise
• Invite the right people
o Core steering group
– Reactive
– Rapid-decision makers
o Wider expert membership
• Contact sponsors
• Begin dialogue and discussion among the members
• Build “web-presence”
• Undertake research – starting with a validation study
• Bring the lead group together to set an action plan
The beginnings of REG
• Work began on the
1st of October 2012
• As of 1st February, the
Respiratory Effectiveness Group
is trading as a social enterprise
organisation
(formally as Respiratory Effectiveness Ltd)
How have we done: members?
Canada: 2
USA: 12
Denmark: 1
Germany: 2
Greece: 2
Italy: 12
Belgium: 1
France: 1
Netherlands: 3
Spain: 4
Sweden: 3
UK: 19
China: 1
Hong Kong: 2
Singapore: 1
South Africa: 1
15 core steering committee members; 44 extended
members = 59 world experts united so far
Australia: 2
Member details: extended group
Europe
•
David Price
•
Leif Bjermer
•
Nicolas Roche
•
Alberto Papi
•
Marc Miravitlles
•
Stephen Holgate
•
Christian Virchow
•
Nikos Papadopoulos
•
Guy Brusselle
•
Alvar Agusti
•
Antonio Anzueto
•
Vibeke Backer
•
Peter Barnes
•
Andrew Briggs
•
Chris Brightling
•
Peter Calverley
•
Daryl Freeman
•
Jonathan Grigg
•
Kevin Gryffudd-Jones
•
John Haughney
•
Rupert Jones
•
Karin Lisspers
•
Ian Pavord
•
Todor Popov
•
Dirkje Postma
•
Henry Chrystyn
•
Hilary Pinnock
•
Miguel Román Rodríguez
•
Dermot Ryan
•
Iain Small
•
Mike Thomas
•
Stephen Turner
•
Omar Usmani
•
Thys van der Molen
•
Wim van Aaldern
•
Claus Vogelmeier
•
Björn Ställberg
Asia/Pacific
•
Gary Wong
•
Synthia Bosnic-Anticevich
•
Teoh Oon Hoe
•
Chen Wang
•
Helen Reddel
•
Eric Bateman
North America
•
Jerry Krishnan
•
Richard Martin
•
Andrew McIvor
•
Jon Campbell
•
Elliot Israel
•
Len Bacharier
•
Randal Brown
•
Gene Colice
•
Nemr Eid
•
Randal Brown
•
Theresa Guilbert
•
Wanda Phipatanakul
•
Malcolm Sears
•
Joan Soriano
•
Stan Szefler
Keeping
members
engaged
• Emails
• Newsletters
• LinkedIn group
• Twitter account
(RepirEffect)
• Face-to-face
meetings…
• Web-based
discussions
Web presence
• Due for launch… any
day
• Designed to allow
continual updates
• Pages to display:
•
•
•
•
•
•
•
Research
Related-literature
REG activities
News updates
Membership / join
Sponsors / support us
Register your study
Website
Sponsors: confirmed
• Research in Real Life: code lists and expertise
• Optimum Patient Care: free dataset access (to the Optimum
Patient Care Research Database)
• Teva: unrestricted grant for set up with assurance of on-going
support for 4 years.
• Boehringer Ingelheim: pledged support (covering ~one-fifth of
annual projected costs) for years 1–4 of the initiative
Sponsors: in discussion
Aligned with their corporate policy and current thinking:
•Chiesi: spoke with Corporate Head of Respiratory and Primary and Medical Lead
on Monday
•Merck: Office of the Chief Medical Officer at Merck has signaled they are interested
in the proposal. A number of questions were asked in early Jan which are now being
considered
•Smaller pockets, but have noted interest
o Aerocrine
o Kyorin
o Mundipharma
Under review (since 24 Jan):
•Pfizer: Marc Berger, VP of Real World Data and Analytics
•GSK: David Leather Vice President and Global Medical Affairs Leader – Relvar
•Novartis: Keith Allen, Director Global Advocacy
•Stallergenes: Under review by the Medical Information Management team with a
view to discussing it with the Medical Directors
No contact as yet with: AstraZeneca, Sunovion, Genentech