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Thank you for your interest in this internet-based survey regarding international participation in clinical trials.
Engage Health (a rare disease health research firm) 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 motivators and deterrents for rare disease patients and their caregivers when considering participation in a clinical trial.
The knowledge learned from this project will be used to educate pharmaceutical companies about what factors are most important to consider when recruiting for a clinical trial.
Inclusion Criteria
- Patient, parent/legal guardian or spouse of patient (living or deceased) diagnosed with a rare condition
- Reside in China / India OR be of Chinese / Indian descent
- Willingness to complete an approximately 15 min on-line survey
This survey will take up to 15 minutes to complete and there is no preparation required, but it will be important that you are in a quiet place when completing the survey.
To begin, click “next” on the bottom of this page and answer each of the questions. Please complete all questions, those marked with an asterisk (*) are required. When completed, click "done" to capture your responses.
Thank you!
Patti A. Engel
President and CEO, Engage Health, Inc.
Reena Kartha MS, PhD
Director of Research Programs, IndoUSrare
Nanjing Yuhuatai
Director of Ginkgo Leaf Rare Disease Family Care Center
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