Rare disease patients and caregivers often face numerous obstacles when participating in clinical trials, and these obstacles are usually the result of a ‘one size fits all’ approach. In recent years, industry professionals are increasingly deploying innovative approaches to both help identify rare disease patients and enable them to actively engage and participate in clinical research. To gain further insight into the perspective of rare disease patients and investigative sites, Advanced Clinical partnered with Know Rare, a company dedicated to connecting patients with clinical research, to conduct a global survey. 

In this insight brief, industry experts share the survey results and offer insights into effective patient engagement strategies and how new approaches can add value for sponsors, site staff, regulators and - ultimately - patients in need of new treatments and care regimes.

You'll learn the following in this brief: 

  • Do patients and caregivers in the rare disease community have an interest in clinical research and do they wish to participate? Do they feel supported?
  • How can we integrate diversity efforts in rare disease clinical research to ensure the optimal participation pool?
  • What are some reported obstacles in converting a patient and caregiver from a ‘practice patient’ into a ‘clinical trial patient’?
  • What are some real-life experiences of patients and caregivers who have participated in clinical research?
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