How to Submit Comments on Glossary Definitions via JIRA

Video

Date: March 30, 2023

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.

Click here to complete the January 12, 2024 public review.

Click here to read more about our collaboration with CDISC to expand access to the MRCT Center’s Clinical Research Glossary.

Time to Listen: Hearing from Young People in Clinical Research – PART 2

Video

Presented on: March 21, 2023

Presented at: MRCT Center Webinar series, Advancing International Pediatric Clinical Research: Time to Listen—Hearing from young people in clinical research

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.

Pediatric Video Series

The MRCT Center presented a five-part virtual conference series, Advancing International Pediatric Clinical Research, to advance the design, review, oversight, and conduct of global pediatric clinical trials. These videos, shared in the webinars, were produced in collaboration with the International Children’s Advisory Network (iCAN.)

Prioritizing Young People in Research

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.

Time to Listen

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.

Prioritizing Young People’s Voices in Clinical Research Part 3

Video

Presented on: November 29-30, 2022

Presented at: MRCT Center Webinar series, Advancing International Pediatric Clinical Research: Facilitating Pediatric Medicine Development – Models of Global Cooperation

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.

Launch Of Equity By Design (EBD) In Clinical Research: The EBD Metrics Framework

Webinar Presentation

Presented on: June 30, 2022

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.

Webinar

Presentation Slides

Presentation Transcript

Return of individual research results (IRR) website launch webinar

Webinar

Presented on: March 24, 2022 at 1:00 pm to 2:00 pm ET

Location: Virtual

The practice of returning IRR is consistently identified by participants as something that participants not only desire but also expect. Returning IRR demonstrates participant-centricity and respect.

A taskforce was convened during 2021 to update and further develop the MRCT Center’s guidance on Returning Individual Research Results to Participants – these resources and tools are ready to be shared, on a new, easy-to-navigate, dedicated website.

This one-hour webinar will include a review of IRR and its importance, a patient advocate describing her own lived experience with IRR, and a live demonstration of the new tools and website.

Presentation Slides