Crossing the Finish Line

Understanding Why Participation Support is Critical to Rare Disease Trial Efficiency and Success

Rare Disease Trials

Unique Challenges & Opportunities

For sponsors, rare disease trials may represent a significant part – or even all – of their portfolio. For rare disease patients, clinical trials may be the only opportunity to access potential treatment. 

Until now, there has been no research to understand the participation support needs of rare disease patients and caregivers. 

The results of focus groups we conducted with ICON (formerly PRA) reveal the gap between the clinical trials experiences and perceptions of patients and the participation support services they receive. 


Get the White Paper

Bridging the Gap

Improving Participation Support in Rare Disease Trials

Learn to identify current deficiencies in trial participation support and reduce the burden of participation as this white paper explores: 

  • Critical success factors for rare disease clinical trial sponsors 
  • Why motivation alone is not enough 
  • How trial participation exposes individuals to significant pressures 
  • What “good” participation support looks like to rare disease patients and caregivers