Research study: unique barriers rare disease patients

The University of Rochester Medical Center is currently recruiting patients and caretakers of patients who have a rare disease diagnosis to participate in a research study that involves a one-time survey. This will help us understand your thoughts about and experiences with participating in clinical research.

The purpose of this study is to learn more about how people impacted by rare diseases make decisions about participating in clinical research. This study also will ask questions about your experiences and comfort with technology (computers, smartphones, etc.). This study will help researchers in planning future clinical research studies for people with rare diseases, including clinical trials.

To learn more about this study or complete the survey if you choose to participate, click on the following link: https://redcap.urmc.rochester.edu/redcap/surveys/ and enter the code: DDPR3RYJ4.

If you have questions about the study, please contact Travis Amengual (Investigator) or Dr. Erika Augustine (Principal Investigator) at (585)-273-3810 or by email at batten@urmc.rochester.edu.