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1. Obtain or create a Data Specification describing the data to be used in the study.

   1. If requesting data from a JHM Enterprise Clinical System, contact the Core for Clinical Research Data Acquisition (CCDA) to request a Data Specification to include in the IRB application.

   2. If requesting data from an IRB-approved JHM research registry, contact the PI for the registry to request a data specification

2. Submit the protocol to the appropriate IRB (e.g. JHUSOM eIRB or JHUSPH PHIRST)

3. Follow additional steps as needed depending on the type of data requested

4. Follow IRB approval

5. Contact the CCDA to obtain data

JHURA Brown Bag on access to JHM data recording

Policy Manuals:

JHM:

Johns Hopkins Medicine Data is patient- or member-related data stored in Johns Hopkins Medicine clinical enterprise systems.

Data Trust policies and guidelines govern the sharing of JHM patient data to support research and operations. JHM data may be shared across JHU or may be shared outside of JHU in many circumstances.

https://intranet.insidehopkinsmedicine.org/data_trust/sharing-data.htm

Precision Medicine Analytics Platform (PMAP): gives you data from multiple sources and a broad suite of analytical tools in an approved, secure, compliant environment.

FAQ’s:

https://www.hopkinsmedicine.org/institutional_review_board/guidelines_policies/guidelines/access_to_patient_data_for_research_faqs.html

FAQ: Data Trust Review of Research and Quality Data Requests

For questions about JHM patient data access please reach out to datatrust@jhmi.edu.

Survey Data Collection Tools