Cultural Barriers and Motivators to Participating in Clinical Trials – For Individuals Residing in United States or other English Speaking Country

Engage Health along with IndoUSrare (a non-profit organization focused on accelerating diagnostics and therapies for rare diseases) and Ginkgo Leaf Rare Disease Family Care Center (non-profit organization supporting rare diseases patients in China) aim to better understand the cultural motivators and deterrents for rare disease patients and their caregivers when considering participation in a clinical trial.  Currently the study has been launched in English for persons residing in or from the United States/Canada. 

  • If you reside in or are from United States/Canada, and you are a person or the parent / legal guardian of a person diagnosed with a rare disease, click here to participate in this 20 minute survey