The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. The Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH), is conducting a research study in the hopes that rare disease patients and families will share their experiences to build learning about the impact of coronavirus on rare disease patients.
People who have previously been diagnosed with a rare disease and their caregivers are being asked 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.
Caregivers of children with Sanfilippo Syndrome are invited to complete the 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting their families.
If you choose to take part in this study, your responses are confidential and stored 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 Once submitted, your responses cannot be withdrawn.
Participation in this research is completely voluntary and will not affect your current or future medical care. If you have any questions about the RDCRN coronavirus survey, contact the study team at firstname.lastname@example.org.Learn more about the RDCRN coronavirus survey and decide if you would like to participate: https://RareDiseasesNetwork.org/COVIDsurvey.
The survey is also being e-mailed directly to patient families from members of the consortia that do clinical research in the RDCRN or one of the patient advocacy groups that work hand in hand with consortia as part of the RDCRN. Cure Sanfilippo Foundation partners with RDCRN through its work with the Lysosomal Disease Network.
The RDCRN’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center is coordinating this project.