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Johns Hopkins University

About Innovative research conducted at Johns Hopkins University is vital to both medical advances and unsurpassed patient care. When privacy is respected, broad sharing of biomedical research data is a best practice. Data shared through Vivli should have patient consent that allows use of data for general research and commercial use.
Will individual participant data be available (including data dictionaries)?  Yes, where available
What data in particular will be shared?  With IRB approval, teams may share anonymized individual participant or patient level data collected for the study.
What documents will be available?  If available, the following documents will be shared:

🗹 Study Protocol

🗹 Statistical Analysis Plan

🗹 Informed Consent Form

🗹 Clinical Study Report

🗹 Analytic Code

For what types of analyses?  To achieve aims in the approved proposal.  
By what mechanism will data be made available?  All datasets will be shared via the Vivli Platform and will go through a Vivli accelerated review. The data sets will be accessed via secure download upon execution of a Data Use Agreement.
Review Criteria for data requests Access to data will be granted to qualified researchers with a complete bona fide scientific research proposal. Use of the data is limited by the terms of the Data Use Agreement, including the aims outlined in the approved proposal.
Exceptions JHU studies may contain limitations in “Additional Information” field within the study listing. These limitations are:

  • Health/Medical/Biomedical use: The dataset can only be used for studying health, medical or biomedical conditions, and does not include the study of population origins or ancestry.
  • Not-for-profit use only: The dataset can only by used by not-for-profit organizations, and not be made available to commercial organizations.

Datasets with specified limitations can only be shared or accessed if the condition(s) listed above are met.