Johns Hopkins COVID Long Study

Data Security

To help protect and maintain your data, we collect minimal demographic information (ZIP code/postal code, birth year) and only gather your name and contact details if you consent to future COVID-19 research contact. Study data are collected and stored in a HIPAA-compliant online database with access limited to approved staff. Your responses are stored under a study ID; the file linking your ID to your name is kept secure on the database with access limited to approved staff.

Once downloaded, study data is maintained on non-public computers that require a password to open. All data used for data analysis is maintained on Microsoft OneDrive which requires a username and password to access along with multi-factor authentication.

Data shared externally have all identifying information removed to prevent linkage back to you. Data that cannot be fully de-identified will not be shared outside our research team. However, there remains a small risk your information could become known to unauthorized parties.

Participation is voluntary and you may withdraw at any time. Already-collected information may still be used per applicable regulations. We take your privacy seriously and follow strict security protocols to protect your information. For questions about data security, please contact covidlong@jhu.edu.

View the Institutional Review Board (IRB) stamped PDF of this language below.

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