Progress so far - Respiratory Effectiveness Group

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