For guidance on conducting COVID-19 research, please visit the Office of Human Subjects Research.
Process to Access Data to Support COVID-19 Research
- Before submitting a request to access data from JH-CROWN, we suggest reviewing this document: JH-CROWN Registry and Biases. To seek help with your study design contact the Biostatistics, Epidemiology and Data Management (BEAD) Core at BEADCore@jhmi.edu or visit the Bloomberg School of Public Health Biostatistics Center.
- To request access to JH-CROWN, fill out the JH-CROWN Request Form and send to JH-CROWN Principal Investigator Dr. Brian Garibaldi firstname.lastname@example.org.
- The investigator should also work with the Core for Clinical Research Data Acquisition (CCDA) to draw up a data spec sheet which should also be attached in eIRB when submitting your protocol. This spec sheet will include your inclusion and exclusion criteria as well as a detailed list of data elements.
- In order to streamline your IRB approval, studies requesting access to JH-CROWN should use a special version of the eFormS entitled “eFormS for Secondary Use of Data/Specimens Related to COVID-19” which has partially completed sections related to the registry. That form is available here.
Rules of the Road
JH-CROWN is built from the experiences of patients, the documentation and care of providers and the skill and dedication of data scientists. We must recognize the contributions of everyone and be part of a collaborative learning community. In recognition of this resource, we expect everyone who utilizes the data to be part of a learning community dedicated to timely and impactful discovery that improves patient outcomes.
- All teams need to abide by the requirement that data is analyzed within the SAFE Desktop and no data is downloaded or copied.
- Teams must provide an annual progress report to the JH-CROWN PI.
- All findings and results must be shared with the JH-CROWN PI, including analytic software, derivative variables, parameter estimates, and manuscripts.
- All publications must include this statement:
The data utilized for this publication were part of the JH-CROWN: The COVID PMAP Registry which is based on the contribution of many patients and clinicians.