Trial By Fire

In our final episode of Trial by Fire, Michele Rhee joins us in discussing her experience as a clinical trial participant and industry expert. Michele is an active patient advocate for cancer and rare disease and has supported the development of patient advocacy functions for multiple pharmceutical companies.  

In this week’s episode, Aaron and Brittany are joined by Anne Marie Mercurio who is a patient research advocate primarily in oncology. They discuss the struggles of caregiving in the COVID-19 pandemic, listening to the patient experience and re-designing clinical trial protocols to fit patient needs. 

The Clara Team is excited to introduce our limited podcast series: Trial by Fire, which chronicles candid clinical trial experiences and discusses how we can tackle these issues as an industry and work towards creating a system that takes into account a diverse set of patient perspectives.

The idea for this podcast was sparked when a patient reached out to our team to ask for support because she could not eat the food the site was providing for participants, and was considering dropping out of the study. We knew she wasn’t alone – and we wanted to hear more direct patient experiences with clinical trials, and to share these critical insights with our community.

Peter lives with multiple chronic conditions but has spent the past two years tirelessly advocating for patients everywhere by taking the morning train from his home in New York City to Washington D.C. Aaron talks to Peter about what advocacy has accomplished, where advocacy will go next, and the things we can look forward to in 2019. 

Aaron interviews Dr. Alex Solyom, senior medical director at Enzyvant, about his team's work in developing a new therapy for an ultra-rare genetic condition known as Farber disease.

A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.

Lilly chats with the ladies of the MS Minority Research Engagement Partnership Network (which is a bit of a mouthful!) Holly, Anita, and Shawn about their work in increasing inclusivity and access in scientific research.