Including the patient voice in R&D, as instructed by FDA, may be of greatest value during clinical trial design and development. Early input from patients and caregivers in protocol design can prevent amendments and increase recruitment and retention in clinical trials. Getting that input can be difficult, especially from patients with rare conditions.

Analyzing unstructured content on social media, while respecting patient privacy, can capture a wide range of authentic voices that are demographically diverse in age, location, race and gender, across the entire patient journey.

This webinar shares how Inspire’s research team organizes and utilizes this unstructured data to gather valuable insights. Sara Ray, Senior Director of Research at Inspire, presents  key findings on patients with rare disease, insights that could establish meaningful outcome measures for treatments, while including the voices of people who may be unable, because of any number of barriers, to participate in traditional research.

In this Inspire-FDA collaboration, Inspire’s research solutions and access to rare disease patients uncovered new information to add to findings from a FDA Voice of Patient gathering.