What Matters to People Impacted by Rare Disease:
An Inspire-FDA Collaboration

Using Novel Methodologies to Obtain Patient Experiences and Perspectives

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.

Download What Matters to People Impacted by Rare Disease:
An Inspire-FDA Collaboration

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At this webinar you will…


Learn how innovative and integrated methodologies can unearth important and unknown information about rare patients


Understand the significance of utilizing patient online communications to move medical research forward


Discover how to create meaningful outcomes measures that reflect treatment benefits that rare patients value

Who Should Attend

  • Research and Development
  • Medical and Scientific Directors and Liaisons
  • Directors-Patient Focused Drug Development
  • Directors-Patient Focused Drug Development
  • Government Officials
  • Anyone interested in including the patient voice in clinical research

Host: Sara Ray, MA
Director Research at Inspire

  • Experienced developing methodology to inform clients and prioritize the patient’s voice and experience in research
  • Focus in qualitative research, interview moderation and analysis of unstructured patient conversation on social media
  • Draws on Sociolinguistics, Ethnography, Discourse Analysis, and unstructured data analysis
  • Leads a team of skilled linguists and research analysts centered on challenges, insights and experiences of the patient journey

Inspire is the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients. The company creates and manages support communities for more than one million patients and caregivers.

Inspire consults with pharmaceutical companies, leading medical centers and government agencies to integrate patient-centricity into the pharmaceutical product lifecycle and patient care journey, accelerating and improving Research and Development, clinical trial design and recruitment through post-marketing brand/unbranded activities and pharmacovigilance.