The MRCT Center is pleased to collaborate with the PHUSE Data Transparency team on materials to educate the general public on Data Privacy and Data Sharing. These materials were presented at a webinar on April 3, 2025. The recording and slides are now available on-demand here.
These infographics and videos are freely available and designed to explain how data is used and protected in clinical research.
Description:Clinical Data Interchange Standards Consortium (CDISC) offers a quarterly public review period, a time when feedback on its new standards can be collected from its users. The plain language definitions developed for the MRCT Center Clinical Research Glossary will be included as a CDISC standard starting in 2023 and will go through a public review process. This helpful video explains how to submit public comments to JIRA, a software application that tracks comments in an organized way.
Description: Dr. Gianna “Gigi” McMillan, an academic bioethicist and MRCT Center pediatrics project member, recorded in-depth interviews with three young people from India, Spain, and the US to create this 2-part video series, Time to Listen.
Part 2: Young people respond after watching adults discuss the goal of elevating their perspective at an international webinar.
Themes:
recognizing the power imbalance
validating young people’s opinions
creating a “safe space” to share
reiterating the importance of young people in clinical research.
A “how-to” video to support the Including Young People in Clinical Research toolkit. These tools, checklists, and considerations are offered to assist investigators, Institutional Review Boards (IRBs), Ethics Committees (ECs), sponsors, and those working with children and adolescents to engage youth respectfully and thoughtfully.
The fifth and final part of the FDA-supported virtual conference series on Advancing International Pediatric Clinical Research showcased select resources and materials from the larger body of work developed by the MRCT Center pediatric working group initiative, including highlights from the four prior webinars in this series.
iCAN, in collaboration with the MRCT Center, produced a three-part video series that showcases young people from around the globe who have been involved in medical care and clinical research. The youth in the videos share some their thoughts on various aspects of what is important about including and listening to young people in clinical research.
Dr. Gianna ‘Gigi’ McMillan, an academic bioethicist and member of the MRCT Center pediatrics project, recorded in-depth interviews with three young people from India, Spain, and the US to create this 2-part video series, Time to Listen. In part 1, young people share their experience in clinical research and best practice guidance on communicating and conveying information to children and adolescents. Part 2 shows young people’s responses after watching adults discuss the goal of elevating their perspective at an international webinar.
Description: Youth share their experiences receiving medical care and healthcare, and express what they believe researchers should ask young people about clinical trial participation.
Description: Youth share their preferences on what doctors have communicated to and with them, and on decision making related to participation in clinical research.
Description: Youth share what they believe researchers should tell young people about clinical trials and research. They further share their ideas on what motivates young people to get involved in clinical research.
Presented at: MRCT Center webinar and public launch, “Equity by Design (EbD) in Clinical Research: The EbD Metrics Framework”
Dr. Barbara E. Bierer moderated this webinar, in which MRCT Center Program Manager Dr. Willyanne DeCormier Plosky introduced the background and structure of EbD Metrics Framework and panelists Yasmeen Long (Faster Cures, Milken Institute) and Dr. Rodrigo Garcia (PPD, Thermo Fisher Scientific) discussed their experiences in testing and utilizing it.
The EbD Metrics Framework is a tool developed by the MRCT Center in collaboration with colleagues from professional, trade, academic, regulatory, and patient advocacy organizations. It is designed to advance organizational diversity, equity, and inclusion (DEI) efforts; orient users toward potential entry and follow-up strategies; and provide guidepost measures for assessing and reporting on progress. To access the tool, please visit the EbD Metrics Framework page.
