Optimizing Rare Disease Clinical Trials Through Patient Experience

Clinical trials play a crucial role in advancing medical research and developing treatments for rare diseases. However, a staggering 80 percent of rare disease clinical trials fail to finish on schedule, posing significant challenges for affected patients and communities. This upcoming webinar will explore the importance of patient experience through valuable insights from industry experts and best practices to enhance trial success rates.

This discussion will highlight the impact of delayed or unsuccessful clinical trials on rare disease patients and their communities. The featured experts will explore current barriers to trial success, including recruitment and retention challenges, as well as methods to enhance patient experience throughout the life of the trial.

This webinar offers a unique opportunity to gain invaluable insights into the challenges faced by rare disease clinical trials and how patient experience can be optimized to improve trial outcomes. Attendees will learn more about making a significant impact on rare disease research and improving the lives of patients and their families.

Speakers

Pam Cusick, SVP, Rare Patient Voice

Pam Cusick is an experienced research professional with more than 30 years of expertise in study design, implementation and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetails with Rare Patient Voice’s mission and vision. Pam hopes to expand Rare Patient Voice’s panels to include all patients and caregivers who want to share their opinions and impact their disease category. Pam earned a BA in psychology from Sweet Briar College, and an MA in psychology from the New School for Social Research. She is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. As Senior Vice President, Pam’s focus is on the continued growth and success of RPV, with an eye on client services, business development and oversight of patient outreach, panel management and marketing.

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Monica Dudley-Weldon, Founder, SYNGAP1 Foundation

In November 2012, Monica’s son, Beckett, was diagnosed with the SYNGAP1 gene mutation. She began to blog about his progress and her journey to finding answers, which lead to building a supportive community of parents and caregivers. As the Founder, President and CEO of the SYNGAP1 Foundation, Monica works to help support these families by raising awareness and creating a strong foundation to accelerate a path to better therapies. In addition to leading the foundation, she is an author, public speaker, consultant on rare disease business strategies and advocates for rare disease legislation at the federal and state levels. Monica was a RARE Champion in Advocacy Award nominee and WEGO Health Awards Nominee in 2015 and every year from 2017 until 2022, a Global Shakers Rare Disease Awardee 2020 and 2021 and named “Top 10 Most Influential Women Leaders of 2022” by Era Industry Magazine.

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KimberLee Heidmann, EVP Patient Experience and Customer Success, Scout Clinical

Scout Clinical co-founder KimberLee Heidmann has been part of the Meeting Protocol Worldwide family of companies since 2001. She now serves as Executive Vice President of Patient Experience and Customer Success, as well as the Global Head of Quality and Regulatory Affairs. Her career in life sciences began in 1998 at a subsidiary of the World Health Organization Mental and Behavioral Disorders Team. KimberLee was part of the core team of innovators responsible for bringing Atlas Clinical Academy to market in 2018, and currently serves as its President. Her passion lies in driving transformative change in the clinical research field, creating inclusive pathways to research care for patients regardless of factors such as location, economic status, age, disability or race.

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