“What’s Your Why?”: Amplifying Participant Voices in Clinical Trials Week 

Videos

Date: May 28, 2025

During Clinical Trials Week, the MRCT Center premiered a weeklong “What’s Your Why?” video series, featuring eleven patients, caregivers, and health professionals who share the personal motivations that drive their commitment to research. From cancer survivors whose trial experiences became today’s standards of care to caregivers finding hope in each study visit, these firsthand stories exemplify why amplifying the voices and lived experiences of participants is vital: it ensures that trial design is ethical, practical, and truly centered on those it aims to serve.

Now it’s your turn: record a brief video telling us What’s Your Why? and send it to mrct@bwh.harvard.edu or tag us on LinkedIn with #WhatsYourWhy—because every voice counts in shaping safer, more effective treatments.


🎥 A Powerful Why

For Amanda Monteiro, it’s personal. After losing her 20-month-old daughter to leukemia, she champions clinical trials to help uncover new treatments and better outcomes for patients everywhere.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Caring Why

Normand Neault cares for his wife, Marilyn, after her Parkinson’s Disease diagnosis. “Clinical trials give us hope,” he says, highlighting the encouragement they find in being involved—working alongside experts, seeing her neurologist more often, and lifting each other up. For this caregiving duo, trial participation is a positive step forward, together.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Quality-of-Life Why

Living with chronic pain, Linda Hunter strives for the best possible care—and she trusts clinical trials to deliver it. She wants researchers actively working on diagnosis, treatment, and management that help her live fully, and she insists on having a voice in studies that matter to her.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Hope-Driving Why

Marta Botanch—a pediatric cancer survivor turned hematology nurse—experienced firsthand the impact of clinical research. Her trial treatment not only worked for her but has since been approved and is helping countless children. She champions research because it drives innovation, improves patient care, and ensures safe, effective therapies tailored to young patients—offering hope, dignity, and a future where every child has access to the best care.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Bridge-Building Why

After her cancer diagnosis, Roberta Albany recognized a disconnect between the medical community and marginalized populations, especially African American communities. “Clinical trials save lives—not just yours, but lives that come after,” she says, and calls on us to be part of the solution—unlocking breakthroughs that enhance quality of life for all.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Surthriver’s Why

Robert Weker, a 3-time cancer “surthriver,” credits his survival to the bravery of earlier trial participants: “I was able to stand on their shoulders—those treatments became today’s standard of care.” Guided by his belief that all patients deserve informed decisions, he champions clinical trials to fuel tomorrow’s breakthroughs.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Survivor’s Why

After battling stage IV melanoma, T.J. Sharpe credits clinical trials with saving his life—and giving hope to thousands walking in his shoes. His message: without research, patients lose access to their best possible options.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 An Advocate’s Why

Marilynne Quarcoo, a long-time participant and patient advocate, shares how letting go of anxiety around research revealed a powerful truth: each of us can contribute to better health care for countless others.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A Determined Why

Diagnosed in her 20s with an unknown subtype of Muscular Dystrophy, Keisha Greaves lives every day without a cure and with only physical therapy as a standard option. “How do we know what will work unless we try it?” she asks—driven by the belief that volunteering for clinical research can unlock treatments not just for her, but for everyone in the disability community.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 An Empowerment Why

Living with Parkinson’s, Marilyn Neault finds that clinical trials give her a crucial sense of control—helping her benchmark her health and learn more about her condition. “Clinical research is vitally important to me,” she says, driving progress for herself and others.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

🎥 A High School Student’s Why

Having to undergo medical procedures designed for adults catalyzed Anvita Ambardekar’s passion for clinical research and pursuit of a biomedical career. Young people like Anvita are the future of innovation and scientific advancements, and her clear-eyed plea for clinical research that focuses on improving healthcare for children and teenagers is a reminder to all of us who champion representation in clinical trials.

What’s Your Why?
#ClinicalTrialsWeek #WhatsYourWhy #ClinicalResearchMatters #MRCTCenterVoices

Data Literacy: MRCT Center and PHUSE Resources

Flyers and Videos

Developed: April 2025 

Developed by: MRCT Center and PHUSE

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.

MRCT Center-led Infographics:

PHUSE-led Videos:

Joint Publications:

We are also thrilled to share some publications about this work:


​*You can learn more about PHUSE’s data transparency work here.

Resources

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.