Identifying when, from where, how, and which format patients obtain information about their rare disease is a key factor in driving patient recruitment and retention. AXON was asked to develop a robust patient recruitment and retention program to support a Phase 3 study in a rare disease.

Our first step in the development of a patient recruitment and retention program that had impact was to truly understand the beliefs, needs, and motivations of people living with this rare disease.

We conducted patient surveys among potential patients and caregivers, leveraging their Facebook community and other communication channels. We also conducted in-depth interviews with several people with this rare disease from numerous countries, including pressure-testing potential messaging and branding. The insights provided clear direction, which:

  • Validated key aspects of study design and protocol
  • Influenced strategic decision-making and identified additional support needs and materials
  • Highlighted areas for branding and messaging realignment

Key deliverables included:

  • Study branding
  • Patient recruitment and retention materials
  • Site training and engagement tools
  • Social media program to further engage people with this disease

The workstream was successful, with the following impact:

  • Refocused client’s overall strategic approach
  • Revised branding and messaging to reflect patients’ needs more closely
  • Provided targeted training to site staff at Investigator Meetings and via eLearning
  • Complete recruitment on schedule (despite COVID delays)