Focus 5: Amplifying the Study Voice - Capturing the Sentiment of the Study Community

Focus 5: Amplifying the Study Voice - Capturing the Sentiment of the Study Community

By BBK Worldwide on Wed, Apr 3, 2019 | 3 min read

landingpage_imageWhen examining the clinical trial experience, there’s nothing more meaningful than hearing directly from those closest to the study – patients, caregivers, physicians, and study sponsors. This year BBK launched its Study Voices initiative. Study Voices is designed to capture the sentiment of the study community at a time when the clinical research industry is growing and evolving. From innovative technology, to protocol design, and everything in between, Study Voices captures the perspectives of those closest to the clinical trial experience, offering insight that can be leveraged for action.

“Focus 5: Amplifying the Study Voice” highlights five members of the study community as they share their perspectives on the clinical trial experience.

In 2005, Roberta’s 17-year-old son Zachary was diagnosed with a rare, inoperable, malignant brain tumor. During his 27-month battle with the disease, she took on the role of caregiver. Her experience made her realize how difficult it can be to navigate the medical world. Following his death, she became committed to helping other patients and families better manage medical conditions, and she founded Zaggo, Inc., a national nonprofit devoted to empowering patients and their families to be more engaged.

At the age of nine, Annie was diagnosed with Crohn’s disease. After trying all available treatment options, and not finding relief, she and her parents decided on a pediatric clinical study at Massachusetts General Hospital in Boston. Now in her late twenties, Annie shares memories of her clinical study experience and her perspective on clinical studies in general.

Bonnie A. Brescia is a founding principal of BBK Worldwide and a leader in patient recruitment and engagement for more than 35 years. Today, Bonnie shares her personal experience helping her father, diagnosed with advanced head and neck cancer, navigate two clinical trial options.

Chris Landon, MD, serves as a Clinical Assistant Professor of Family Practice and Pediatrics at the University of California, Los Angeles and Director of Pediatrics at Ventura County Medical Center. He has served as a Clinical Assistant Professor of Pediatrics at the University of Southern California. Over the years, he has pioneered device development in the area of pediatric pulmonary medicine. His work reflects his commitment to driving future progress through advancements in research and development.

Rare Genomics Institute and its rare disease patient network RareShare.org are dedicated to connecting families with research technologies, physicians, and scientists from across the world. In this interview, Rare Genomics Institute Founder Dr. Jimmy Lin, with CEO Paul Schindler, VP for Strategic Alliances Nolin Huddleston, and Alice Cheng from RareShare.org discuss their approach to community building.

Hear their stories. Be inspired. Be part of the Study Voices community.

Topics: Patient Engagement, Rare Disease, Pediatric Studies, Informed Consent, Patient Experience, Study Voices