About this Work

In 2020, the MRCT Center launched a pilot project to develop a plain language clinical research glossary with an amazing workgroup of patient advocates and other representatives from across the clinical research industry. Please see the list of workgroup members below.

The team worked together to create clinical research definitions and explanations that are:

  • plain language
  • understandable to a wide audience
  • in line with industry and regulatory standards
This resource launched in June 2021

The Clinical Research Glossary Pilot: Approach

1) Selected words from various participant-facing materials*

2) Collected feedback on draft plain language definitions*

3) Held consensus conversation to finalize definitions*

4) Created supplemental information and web template*

5) Finalized website in preparation for launch*

*Ongoing patient advocacy engagement and iterative usability testing

Workgroup Members

The MRCT Center is grateful for the workgroup’s contributions and participation in this pilot project. The Clinical Research Glossary project was lead by MRCT Center Program Manager, Sylvia Baedorf Kassis, MPH and Faculty Director, Barbara Bierer, MD.

Name Organization
Behtash Bahador CISCRP
Sarah Balay Privacy Analytics/PhUSE
Stephen Carr Janssen
Jessica Chaikof Patient Advocate
Lisa Chamberlain James Trilogy Writing and Consulting
Deborah Collyar PAIR/Patient Advocate
Jean-Marc Ferran Qualiance ApS/PhUSE
Helle Gawrylewski CDISC Glossary Lead/Hawkwood Consulting LLC
Art Gertel MedSciCom, LLC
Shannon Hamill Patient Advocate
Lauren Hamill Patient Advocate
Julie Holtzople Astra Zeneca
Lukasz Kniola Biogen/PhUSE
Marilyn Neault Patient Advocate
Elyssa Ott Janssen
Brandis Pickard CISCRP
Robyn Rennick GlaxoSmithKline
Marian Ryan Institute for Healthcare Advancement
T.J. Sharpe Medidata/Patient Advocate
Kamila Sroka-Saidi Boehringer Ingelheim
Mary Stober Murray National Minority Quality Forum
Gloria Stone G Stone Connections
Michele Teufel Astra Zeneca
Desiree A.H. Walker Patient Advocate
Robert Weker Patient Advocate

Glossary Workgroup Members By Group

  • Patient/Advocate
  • Non Profit/Academia
  • Medical Writing
  • Life Sciences company
  • Independent Consultant
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