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Rob Camp 28 June 2018 EUPATI WEBINAR Community Advisory Boards Quick Introduction

Intro slides EUPATI CABS webinar

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Rob Camp28 June 2018

EUPATI WEBINAR

Community Advisory BoardsQuick Introduction

European Patients’ Academy on Therapeutic Innovation

§ The European Community Advisory Board (ECAB) was established in 1997 as a forum for interaction between the community of people living with HIV and AIDS (PLWHA) and the pharmaceutical industry.

§ ECAB operates as a working group of the European AIDS Treatment Group (EATG), a European voluntary patient organisation for PLWHA.

§ At the end of 2016 ECAB had 112 members. The membership covers a total of approximately 38 countries.

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European Patients’ Academy on Therapeutic Innovation

§ A group of patients who offer their expertise to public or private sponsors of clinical research Ø Overall programme development

Ø A single clinical trial

Ø Other aspects beyond the research programme

§ The same group of patients advises several sponsors in their field Ø Avoids selection of patients’ representatives by the sponsor

§ Agenda and secretariat driven by the patients

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A Community Advisory Board is

European Patients’ Academy on Therapeutic Innovation

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Same disease area, different sponsors

Sponsor

AAdvisors

(clinicians)Advisors

(patients)

Sponsor

BAdvisors

(clinicians)Advisors

(pa>ents)

Sponsor

CAdvisors

(clinicians)Advisors

(patients)

Advisors (patients)

Sponsor

ASponsor

B

Sponsor

C clinicians

CAB modelSponsor-dependant model

European Patients’ Academy on Therapeutic Innovation

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SCOPE

§ Also Community Relations (DSMBs, Investigator Meetings), marketing practices and publicity…

Trial protocolAll aspects, not just informedconsent

Strategy trials

Collaboration with competitors

Compassionate use programme

Pipeline drug developmentportfolio and plan

Reasonable pricingWorld-wide AccessPatent availability to generics companies

European Patients’ Academy on Therapeutic Innovation

§ Shorten the development time § More patient-friendly PROMs§ Faster recruitment/less drop-outs § Registries§ Disease environment

Ø Real-life experience + social responsibility

§ Higher quality resultsØ Faster approval + market access.

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Value

European Patients’ Academy on Therapeutic Innovation

§ October European Round Table of Companies meeting Barcelona - the value of listening to patients early

§ CFE, Duchenne, TSC§ [email protected], [email protected]

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Forward ho!