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Wednesday, June 27 • 8:00am - 9:15am
#308: How Do Patients and Other Multi-Disciplinary Stakeholders Collaborate to Develop Patient Registries which Accelerate Research?

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Component Type: Session
Level: Basic
CE: ACPE 1.25 Knowledge UAN: 0286-0000-18-628-L04-P; CME 1.25; IACET 1.25; RN 1.25

This session will include examples of enhanced patient registry design and implementation by bringing together diverse stakeholders, including industry, regulators, researchers, clinicians, patients, families, and patient advocacy groups. Patient engagement is included at each stage of the process.

Learning Objectives

Describe ways in which patient engagement can facilitate development of registry governance to satisfy multiple stakeholder priorities; Identify at least three methods used to involve and align multiple stakeholders in registry design and governance; Discuss challenges of designing registries for rare disorders and ways to help address such challenges.


Steven L. Roberds, PhD


United We Stand: How Can Patients and Other Stakeholders Develop Registries to Speed up Research into Rare Diseases?
Stella Blackburn

Patient Registry Data Governance: Considering the Priorities of a Diverse Group of Stakeholders
Kate Avery, MPH

EMA Perspective
Tânia Teixeira, PharmD

avatar for Kate Avery

Kate Avery

Director of Research and Patient Engagement, Beyond Celiac
Kate is the Director of Research and Patient Engagement at Beyond Celiac. She manages Go Beyond Celiac, a community for people with celiac disease. Go Beyond Celiac aims to engage people with celiac disease and their families in research and collect information to accelerate celiac... Read More →
avatar for Stella Blackburn

Stella Blackburn

Vice President, Global Head of Early Access and Risk Management, IQVIA
Dr Stella Blackburn. MB BS, MA, MSc, FRCP(Ed), FISPE, FFPM, DLSHTP, Dip Pharm Med.VP, Global Head of Early Access & Risk Management, Real World Insights at IQVIA. Stella studied medicine at Cambridge and Guys and worked in hospital medicine before joining the pharmaceutical industry... Read More →
avatar for Steven Roberds

Steven Roberds

Chief Scientific Officer, Tuberous Sclerosis Alliance, United States
Steve leads the development and execution of the TS Alliance's scientific strategy through partnerships and conversations with stakeholders including individuals and families affected by TSC, basic and clinical researchers, healthcare providers, government agencies, and other non-profit... Read More →
avatar for Tânia Teixeira

Tânia Teixeira

EMA Official at the FDA, European Medicines Agency
Tania Teixeira is the EMA Liaison Official to FDA. She started her career in the pharmaceutical industry and joined EMA in 2004. She held positions as a Head of service for Referrals, dealing with emerging concerns which require a harmonised position across the EU, and as Product... Read More →

Wednesday June 27, 2018 8:00am - 9:15am EDT
Room 151AB Boston Convention and Exhibition Center 415 Summer Street, Boston, MA 02210 USA
  05: Patient Engagement, Session