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Speakers

Design New Patient Registry Models that Harmonize Multiple Data Sources to Promote Sustainability

December 5-6, 2017
  • Philadelphia, PA

Karen M. Anderson, PhD
Senior Director, Medical Affairs, Rare Genetic Diseases
Agios Pharmaceuticals

Elise Berliner, PhD
Director, Technology Program,
Center for Outcomes and Research Evidence
AHRQ (Agency for Healthcare Research and Quality) (invited)

Tara Caulder
USIDNET Project Director
Immune Deficiency Foundation

J. Alexander Cole, DSc, MPH
Senior Director and Global Head, Epidemiology
Alexion Pharmaceuticals

Christiane Denzel
Global Head, Rare Disease Registries
Sanofi Genzyme

Michelle Durborow
Senior Director, Scientific Operations
The Life Raft Group — a global patient group focused on
ensuring the survival of gastrointestinal stromal tumors (GIST)

Aliza Fink, DSc
Director, Epidemiology
Cystic Fibrosis Foundation

Joseph D. Giuliano
Senior Director, Global Medical Operations and Patient Registry
Amicus Therapeutics

Yun Gu, PhD
Director, Epidemiology, Worldwide Safety & Regulatory
Pfizer Inc

Christopher Jones, PhD
Co-founder & Partner
iTakeControl Health

Michael Keating, PharmD, RPh
Associate Medical Director
Janssen Pharmaceutical Company

Liz Kennerly
Patient and Patient Advocate
United Mitochondrial Disease Foundation

Rezaul Khandker
Director, Health Outcomes
Merck

Megan Lynch O’Boyle
Principal Investigator
Phelan-McDermid Syndrome International Registry (PMSIR)

Gary Palgon, CISSP
Vice President, Healthcare and Life Sciences Solutions
Liaison Technologies, Inc.

Nicole Robichaud
Associate Director, Real World Late Phase Studies
Shire

Christopher Scalchunes
Vice President, Research
Immune Deficiency Foundation

Ashley Winslow, PhD
Senior Director, Translational Research, Orphan Disease Center
University of Pennsylvania

Karen M. Anderson, PhD
Senior Director, Medical Affairs, Rare Genetic Diseases
Agios Pharmaceuticals

Elise Berliner, PhD
Director, Technology Program,
Center for Outcomes and Research Evidence
AHRQ (Agency for Healthcare Research and Quality) (invited)

Tara Caulder
USIDNET Project Director
Immune Deficiency Foundation

J. Alexander Cole, DSc, MPH
Senior Director and Global Head, Epidemiology
Alexion Pharmaceuticals

Christiane Denzel
Global Head, Rare Disease Registries
Sanofi Genzyme

Michelle Durborow
Senior Director, Scientific Operations
The Life Raft Group — a global patient group focused on
ensuring the survival of gastrointestinal stromal tumors (GIST)

Aliza Fink, DSc
Director, Epidemiology
Cystic Fibrosis Foundation

Joseph D. Giuliano
Senior Director, Global Medical Operations and Patient Registry
Amicus Therapeutics

Yun Gu, PhD
Director, Epidemiology, Worldwide Safety & Regulatory
Pfizer Inc

Christopher Jones, PhD
Co-founder & Partner
iTakeControl Health

Michael Keating, PharmD, RPh
Associate Medical Director
Janssen Pharmaceutical Company

Liz Kennerly
Patient and Patient Advocate
United Mitochondrial Disease Foundation

Rezaul Khandker
Director, Health Outcomes
Merck

Megan Lynch O’Boyle
Principal Investigator
Phelan-McDermid Syndrome International Registry (PMSIR)

Gary Palgon, CISSP
Vice President, Healthcare and Life Sciences Solutions
Liaison Technologies, Inc.

Nicole Robichaud
Associate Director, Real World Late Phase Studies
Shire

Christopher Scalchunes
Vice President, Research
Immune Deficiency Foundation

Ashley Winslow, PhD
Senior Director, Translational Research, Orphan Disease Center
University of Pennsylvania