ICON’s Center for Rare Diseases industry experts discuss how the Patient-Centric Trial Development Toolkit for rare diseases can incorporate and elevate the patient voice in your company’s drug development program.

In a live conversational format, panelists will discuss the toolkit, which provides a framework for systematically and iteratively incorporating patient perspective from earliest stage of development and throughout the drug development lifecycle for any rare disease clinical program. The toolkit includes:

• Patient-centric protocol risk assessment tool
• Rapid participation burden survey tool
• Patient involvement value dossier
• “What to ask when you’re interested in a clinical trial: A guide for rare disease patients & caregivers”

Attendees will learn:

• How this free toolkit can be used throughout the Rare Disease drug development lifecycle to effectively identify and mitigate barriers for intended participants which often translate to risks of inefficiencies like screen failures, high drop-out rates, protocol amendments and timeline delays
• How Patient Advocacy professionals and champions of patient-centricity elevate patient voice within drug development by implementing these tools
• How the toolkit can be used to empower rare disease patients and caregivers to advocate for their needs in clinical trial participation