Emmes Leader Speaks on the Evolving Role of Patient Advocacy in Clinical Research

Christine McSherry is a Presenter at a Major Clinical Trials Conference

Emmes, a global, full-service Clinical Research Organization (CRO) dedicated to supporting the advancement of public health and biopharmaceutical innovation, announced that Christine McSherry is speaking at today’s Outsourcing in Clinical Trials conference in Boston, Massachusetts. Her presentation, titled “The Importance of Patient Advocacy Through a CRO,” addresses best practices for thoughtful, engaged patient recruitment, as well as ways to provide efficiencies and better compliance within clinical studies.

McSherry has both a corporate and a personal connection to the importance of integrating the patient’s perspective into clinical research. Her son, Jett, who has Duchenne Muscular Dystrophy (DMD), was the impetus for her decision to create the Jett Foundation in 2001 to support people and families affected by DMD through programming, educational opportunities and ongoing support. In 2016, she left the Jeff Foundation to co-found Casimir and serve as its chief executive. Casimir was acquired by Emmes in March 2022.

“My experiences and frustrations with DMD clinical trials led me to co-found Casimir with Mindy Leffler, whose son also suffers from the disease,” said McSherry. “We believe that a one-size-fitsall clinical trials approach isn’t appropriate for certain diseases, like muscular dystrophy. Our goal was to demonstrate that less intrusive options could produce more reliable outcomes and better treatment. Virtual trials and home-based assessments eliminate the need for patients and their families to travel to trial sites and minimize disruption to their regular routines.”

Emmes Chief Executive Officer Dr. Christine Dingivan said, “Christine McSherry has become a champion and key contributor to the evolution of patient advocacy in research. Casimir’s reputation as an innovator in rare disease clinical trials was a key factor in our desire to join forces earlier this year.

“She is known for her expertise in and passion for championing the needs of patients,” continued Dr. Dingivan. “We believe that patient engagement will continue to play a major role in clinical trials for rare and orphan diseases and will have growing applicability across the range of therapeutic areas we support.”

McSherry noted, “Every decision we make is grounded in an understanding of and respect for the role patient communities play in informing and participating in clinical research. Enlightened CROs are prioritizing patient-centricity and empathy, driving even greater research connections between sponsors, patients and their families.”

McSherry’s outreach before the Outsourcing in Clinical Trials conference included:

• Hosting a panel discussion on patient centricity at the World Orphan Drug Conference on
  July 12, 2022.
• Contributing to an article titled, “Patient Voice Elevates Rare Disease Trials,” published in
  Outsourcing Pharma on July 28, 2022.
• Joining an Applied Clinical Trials podcast titled “Pioneers in Patient Data Capture,” with
  colleague Mindy Leffler on September 6, 2022.

Casimir has continued to be recognized for its DMD research innovations:

• Muscle & Nerve featured Casimir’s Duchenne Video Assessment (DVA), a home-based clinical outcome assessment that measures movement patterns, ease of movement, and progression as an indicator for DMD studies and treatment interventions.
• Capricor Therapeutics used the DVA as a secondary endpoint, for the first time ever, in the HOPE-3 clinical trial.
• PLOS One highlighted Casimir’s recently developed DVA Scorecards, used by DVA-trained physical therapists to score the videos.
• The NIH-sponsored Muscular Dystrophy Coordinating Committee Meeting included Leffler as a featured speaker on Casimir’s novel outcome measure development.

“The Duchenne Video Assessment tool is a perfect example of integrating the patient voice into
rare disease research,” said McSherry. “Patient advocacy can shape the development of clinical
trials and yield real quality-of-life benefits.”
 

About Emmes
Founded in 1977, Emmes is a global, full-service Clinical Research Organization dedicated to
excellence in supporting the advancement of public health and biopharmaceutical innovation.
The company’s clients include numerous agencies and institutes of the U.S. federal government
and a wide range of biotechnology, pharmaceutical and medical device companies throughout
the world. To learn more about how our research is making a positive impact on human health,
go to the Emmes website at www.emmes.com.