The Rare Disease Patient Experience

This webinar will examine and walk you through common aspects of a rare disease study with specific examples of the speakers’ own experiences.  From the viewpoints of a Clinical Project Management and a Patient Caregiver Director of Strategic Partnerships and Advocacy, you will absorb examples of what a rare participant, caregiver, or family is faced with and the critical result of any misalignments when it comes to clinical trials.

Throughout the webinar, our speakers will discuss in depth how thoughtful planning from the sponsor and CRO can maximize the operational success of a clinical study. By the end of the webinar, you will understand the rare disease participants’ unique considerations, and how Emmes helps to incorporate that knowledge into every rare disease clinical trial we are faced with. Emmes’ approach to clinical trials has the participants acting as people, not “subjects.”

Key Learning Objectives

• How can thoughtful planning from the sponsor and CRO maximize the operational success of a clinical study?
• The panel will discuss how aspects of study design, communication with stakeholders, patient recruitment, and retention strategies can all contribute to successful clinical trial delivery.
• Rare disease studies require a unique and tailored approach; the panel will give examples of how this can be incorporated into planning your next clinical trial.
• Sites and investigators are geographically challenged, not as many specialists for disease/disorders, and participants often need to travel to the site.