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Monday, June 27 • 10:45am - 12:00pm
#125: Patient Recruitment in Rare Diseases: Ideas and Framework for Out-of-the-Box Exploration

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Limited Capacity seats available

Component Type: Session
Level: Basic
CE: ACPE 1.25 Knowledge UAN: 0286-0000-16-520-L01-P; CME 1.25; IACET 1.25; RN 1.25

Patient recruitment is a challenging activity, which becomes even more so in rare diseases where populations are small, patients are geographically dispersed, and eligible subjects may not be physically (or economically) capable of traveling to a trial site. Unfortunately, current recruiting methods (e.g., listing on trial and patient organization websites, relying on key opinion leaders and trial investigators, billboards) may be limited in reach, overly reliant on busy physicians, and too costly or cost-ineffective. It behooves clinical trialists in rare diseases to consider mechanisms beyond these standard approaches. The aim of this session is to catalyze unconventional thinking and to provide a framework to organize innovative recruitment ideas.

Learning Objectives

Discuss the challenges of patient recruitment in rare diseases; Compare conventional and out-of-the-box ideas for patient recruitment; Illustrate a framework for organizing innovative recruitment ideas.


Badri Rengarajan, MD


Leveraging Claims Data for Targeted Recruitment
Donny Chen, MBA

Direct-to-Patient Digital Recruitment: A Targeted Approach to Recruitment Enrollment and Retention Problems
Bethany Bray

Bringing Clinical Trials to Patients: Leveraging Convergent Data Sources to Accelerate Recruitment
Scott Douglas Schliebner, MPH

avatar for Badri Rengarajan

Badri Rengarajan

Medical Affairs Lead, ASPIRE Unit, Actelion
15 years’ experience across medical affairs, product development strategy and new product planning, regulatory affairs, business development, strategy: Former Board President, International Pemphigus and Pemphigoid Foundation (rare disease foundation); Senior Medical Director, Archimedes; Director, BD and Market Research, Nodality; Regulatory Team Leader, Genentech; Junior Engagement Manager, McKinsey. Education: A.B., Biology and Public... Read More →

avatar for Bethany Bray

Bethany Bray

Chief Executive Officer, Co-Founder, AutoCruitment
Bethany Bray, Oncology and Neuroscience Researcher, Entrepreneur and Technologist, founded AutoCruitment (a technology-enabled digital patient recruitment platform) with a vision to utilize the power of the internet to address recruitment, enrollment and retention problems in clinical trials; by finding the Right patients Faster. She has 10 years of experience in Pharmaceutical Research, Operations and Business Development and holds a BSc in... Read More →
avatar for Donny Chen

Donny Chen

Director, Medical Affairs Research Operations, PPD
Donny Chen, director of medical affairs research operations at PPD, has spent the last 17 years designing and spearheading observational research studies in a variety of therapeutic areas, with particular expertise in strategy, analysis and project management. Mr. Chen graduated Phi Beta Kappa from the University of Chicago with concentrations in economics and medicine. He received his MBA from the Chicago Booth School of Business with... Read More →
avatar for Scott Schliebner

Scott Schliebner

Vice President, Scientific Affairs, Rare Diseases - Federal Programs, PRA Health Sciences
Scott Schliebner, VP of Scientific Affairs – Rare Diseases, is a clinical strategist with a 20+ year background in clinical development specializing in rare diseases and orphan drug development. His breadth of experience encompasses all trial phases; a broad variety of study designs; interventional and observational studies; involving small molecules, biologics, gene therapies, and enzyme replacement therapies. His therapeutic expertise focuses... Read More →

Monday June 27, 2016 10:45am - 12:00pm
113A Pennsylvania Convention Center 1101 Arch Street, Philadelphia, PA 19107 USA