Where have we got to?

1. Where have we got to? REG, the first few months: Alison Chisholm

2. 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”

3. Set up an independent social enterprise • Invite the right people • Core steering group • Reactive • Rapid-decision makers • 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

4. 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)

5. How have we done: members? Denmark: 1 Germany: 2 Greece: 2 Italy: 12 Belgium: 1 France: 1 Netherlands: 3 Spain: 4 Sweden: 3 UK: 19 Canada: 2 USA: 12 China: 1 Hong Kong: 2 Singapore: 1 Australia: 2 South Africa: 1 15 core steering committee members; 44 extended members = 59 world experts united so far

6. 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 • Federico Lavorini • 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 Africa • 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

7. Keeping members engaged Emails Newsletters LinkedIn group Twitter account (RepirEffect) Face-to-face meetings… Web-based discussions

8. 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

9. Website

10. 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

11. 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 • Aerocrine • Kyorin • 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