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patient group perspective Oliver Timmis & Dr Nicolas Sireau, AKU - PowerPoint PPT Presentation

Sep 26, 2022 •233 likes •467 views

10 tips on how to access EC funding from a patient group perspective Oliver Timmis & Dr Nicolas Sireau, AKU Society Dr Tony Hall, Cudos oliver@akusociety.org nick@akusociety.org tony@findacure.org.uk 1) Preparation Research in Liverpool

  1. 10 tips on how to access EC funding from a patient group perspective Oliver Timmis & Dr Nicolas Sireau, AKU Society Dr Tony Hall, Cudos oliver@akusociety.org nick@akusociety.org tony@findacure.org.uk

  2. 1) Preparation

  3. Research in Liverpool 2005: Post-mortem of a patient 2009: AKU cell model 2010: Natural history study 2011: AKU mouse model 2012: National AKU Centre Led by Prof L Ranganath, Prof Jim Gallagher and Prof Jonathan Jarvis.

  4. 2) Find the right partners

  5. DevelopAKUre Consortium Vital to identify the right partners: ideally you should already have a working relationship

  6. 3) Find the opportunity

  7. FP7 Health 2012 Innovation 1 Announced in 2011, for projects to start in 2012

  8. 4) Understand the application

  9. Application Process Two stage process: Started in May 2011 Approval for funding Feb 2012 Stage 2: 125 pages Rigid structure: 1. Scientific and Technical Quality 2. Implementation and Partners 3. Impact 4. Ethics 5. Consideration of Gender aspects 6. Bibliography

  10. 5) Read the guidance (again)

  11. Application Process

  12. Challenges Registration Partner Identification Code (PIC) Content Motivating partners Strict templates Project Budget 117 page document Eligible costs € 375,000 rule 30% to SMEs 10% Management Categories (RTD, Management, Other) Conversion rates

  13. 6) Get external support

  14. External Support National Contact Point: Alex Harris University of Liverpool research office: Dr Nick Rhodes Vincent Grek, Only For Children Pharmaceuticals Liverpool Ethics Committee

  15. 7) Regulatory

  16. Orphan designation – Ensure adequate data – Get an expert to write / review – Apply in time! Scientific advice / protocol assistance – Ensure underway before H2020 – Apply in time!

  17. 8) Clinical

  18. Proper planning of CDP essential Think through all clinical issues – Natural history – Efficacy measures – Surrogate endpoints – Number & size of studies – Logistical issues – Specialist centres – Ethical issues

  19. 9) Implementation

  20. Project Implementation Two representatives from each partner join the project board: DAILY Workpackage leader WEEKLY TC on Thursdays Minutes stored online 6 MONTHS Project Board meeting 18 MONTHS EC reports

  21. 10) It’s a marathon!

  22. “These trials have given us great hope. This treatment could completely change our lives. We’re that one step closer to a cure .” - AKU patient

  23. Thank You! Contact us: oliver@akusociety.org nick@akusociety.org tony@findacure.org.uk Twitter: @AKUSociety

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