Who will be using my data?
De-identified data will be made available to the scientific community, and will be distributed with any publications that arise from this study. If necessary to protect the privacy of participants, individual bits of data might be removed or only shared in aggregate. These data cannot be used to identify participants. Additionally, each participant will be given a copy of their own data as part of this study.
How will my data be protected?
All data will be stored on a firewall and password-protected on secure project servers of Open Humans & OpenClinica. This study does not collect individual identifiers such as name or email addresses. Instead, Open Humans assigns each participant a study ID on enrollment.
Will someone make money off my data?
Participant data will not be sold and data sharing will be performed within strict protocol-driven procedural guidelines.
How long will my data be used for?
The collection period is aimed to end in May 2022. After this we will stop gathering new data but will need some time to analyze everything collected.
Can I delete my data?
Yes! Your data belongs to you. You can do so automatically from here, or manually through the Open Humans website.
Please login to view the automatic delete links.
Follow these steps to delete your data through the Open Humans website:
- Go to https://www.openhumans.org/activity/covid-open-survey/
- Click on "Leave project" in the bottom left corner
- Check "Remove my data files for Covid Open Survey from Open Humans"
- Click on "Withdraw & revoke authorization"
Can others access my data?
Other individual participants will not be able to access your data. However, the overall dataset will be made available to the science community.