In general, only the RSV-PR Study Team and the website developers will see your personal information. These individuals are trained to protect patient privacy and keep data secure. RSV-PR will not share your name and other personal information with anyone else, except in specific situations noted in the Informed Consent Form.
In the database, we will replace your name with a code number to hide your identity in the data. Only qualified and approved scientists and researchers will have access to this "de-identified" or "coded" data, meaning they will not have access to your name or other personal information that could reveal your identity. They will study the de-identified information from RSV-PR to look for trends or common issues that many individuals, or certain groups of individuals, may experience. For instance, they might discover that 4,000 out of 10,000 RSV-PR participants reported having severe muscle pain shortly after the vaccination, but they won’t know who any of those individuals are. RSV-PR may also share de-identified information with other databases, registries, and data repositories. Combining RSV-PR data with other sources may help us expand our knowledge about pregnancy and could lead to new study ideas and future treatments.
RSV-PR follows strict rules to protect your privacy, including relevant federal laws and regulations. Generally, only the RSV-PR Study Team will know that you are part of RSV-PR and will have access to your information. However, there are exceptions to this situation listed in the Consent form (if you have already joined, a copy is available on the Dashboard). For additional information, please see the Privacy Policy and Disclaimers and Policies documents available through RSV-PR.