The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. We want to learn from you and hope that you are willing to share your experience.

The Rare Diseases Clinical Research Network’s (RDCRN) Data Management and Coordinating Center, which is supported by the National Institutes of Health (NIH), at Cincinnati Children’s Hospital Medical Center is coordinating this research study. The RDCRN is asking people who have previously been diagnosed with a rare disease to take part in a research study called, “Impact of COVID-19 on People Living with Rare Diseases and Their Families.” The study is a survey and should take approximately 20 minutes to complete. 

If you choose to take part in this study, the RDCRN will keep your responses confidential and store them on secure research servers. You may withdraw from the study at any time before you submit your responses. Once submitted, your responses cannot be withdrawn. 

Your participation in this research is completely voluntary and will not affect your current or future medical care. If you have any questions or would prefer to not be contacted in the future about participation in this research study, please contact the study team atrd.covid19@cchmc.org

Please click here to learn more about the survey and decide if you would like to participate: https://RareDiseasesNetwork.org/COVIDsurvey

Thank you for considering to take part in this important survey. 

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