Scout Clinical and ICON Findings From Rare Disease Trial Participant Focus Group


Scout Clinicala provider of comprehensive clinical trial patient services, has announced the results of their rare disease clinical trial patient focus group. Conducted in partnership with ICON plc, the initiative sought to amplify the voices of those whose lives are touched by rare diseases.

The information from these focus groups addresses the gap between the experiences and perceptions of patients and the participation support services provided to them during clinical trials. The series found:

  • Rare disease trial participation exposes participants to significant pressures across a variety of categories—including financial, physical, logistical, psychological and emotional—all incremental to the burdens participants already bear by virtue of living with a rare disease.
  • Trial participation support services had effectively helped respondents overcome barriers to participation.
  • Fully 30% of participants identified emotional support/counseling as a service that could make it easier for them to participate in a clinical trial.

Read the full results and insights

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