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

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?

15 core steering committee members; 44 extended members = 59 world experts united

so far

Australia: 2

Canada: 2

China: 1Hong Kong: 2Singapore: 1

USA: 12

South Africa: 1

Member details: extended group

• Emails• Newsletters• LinkedIn group• Twitter account (RepirEffect)• Face-to-face meetings… •Web-based discussions

Keeping members engaged

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

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 Aerocrineo Kyorino 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

Sponsors: in discussion