Scout Clinical Announces Rare Disease Clinical Trial Participant Focus Group Findings


DALLAS– Scout Clinical, a leading provider of comprehensive clinical trial patient services, today announced the results of their rare disease clinical trial patient focus group. Conducted in partnership with ICON plc (formerly PRA Health Sciences), the initiative sought to amplify the voices of those whose lives are touched by rare diseases. Prior to Scout Clinical’s focus group series, no systematic research has been conducted to understand the participation support needs of individuals affected by rare diseases or the effect of unmet participation support on trial participation and completion.

The information from these focus groups addresses the significant 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.

“Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to enroll or remain in clinical trials,” said VP, Patient Services KimberLee Heidmann at Scout Clinical. “Focus group participants said that motivation is not enough. Identifying where, specifically, trial support services must improve is the first step toward making rare disease trial participation and completion less onerous.”

Click here to read the full results and insights from the focus group.