Patient Registry Classification, Strategy & Design Working Group

Chair: Chris L. Pashos PhD
Vice President and Executive Director, Abt Bio-Pharma Solutions, Inc. - HERQuLES Lexington

Goal: to establish consensus on the definition and classification of patient registries and their inherent components, and to establish good research practices related to choices of registry strategy and consequent design.

13th Annual International Meeting Presentation
Forum Presentation

Current Project:
ISPOR Taxonomy of Patient Registries: Classification, Characteristics & Terms

Work Plan: determine and define the most appropriate language for patient registry standardization, a patient registry terminology (common language), universal patient registry characteristics and a globally harmonized patient registry classification system.

Each term will include a brief definition, a broader explanation, the associated values & uses, and conclude with a discussion of issues or conflicts related to the term. The issues/conflicts will be the basis of the Working Group’s Good Research Practices papers.

Project Team 1: Characteristics & Classification of Patient Registries
Co-chairs: Sally Thompson PhD, MSc & Dimitris Polygenis PharmD
Members: Susan Conner MPH; Grace Leung MPH; Neal Mantick MS

Project Team 2: Design, Development & Implementation
Chair: Eric Gemmen
Members: Claudio Faria PharmD, MPH; Paula Funk Orsini PhD; Yvonne Lis PhD;
Kathryn Starzyk MSc, BA; Gabriel Sandblom MD, PhD

Project Team 3: Analysis
Co-chairs: Chris Blanchette PhD, MS, MA & Shital Kamble MS, PhD(c)
Members: Donatus Ekwueme PhD; Alex Exuzides PhD; Carl Gibbons BSc; Eric Gemmen;
Joanna Lis PhD; MSc

Project Team 4: Reporting & Publishing
Co-chairs: Kirsten Hall Long PhD & Diana Frame MS
Members: John Ellison MS; Siva Narayanan MS, MHA