JHS Data Request
This is the mechanism used by JHS to solicit and track all data requests for reports, publications, presentations and for ancillary studies. Using this mechanism, investigators who plan to conduct data analysis can obtain a customized dataset.
Requests for JHS data require approval of a JHS Manuscript Proposal or Ancillary Study Proposal. Please note: ANY data request related to an Ancillary Study or Manuscript Proposal will not be reviewed until approval from the Ancillary Study Sub-Committee and/or the Presentations and Publications Sub-Committee is confirmed.
As part of the manuscript proposal process, you will be asked to submit a Data and Materials Distribution Agreement (DMDA) prior to obtaining data.
As part of the ancillary study proposal process, you will be asked to submit a Data and Materials Distribution Agreement (DMDA) prior to obtaining data.
To submit a request for data, complete a data request form (Click here). All requests will generally be reviewed within two weeks of the date of submission. Due to the complexity to a number of data requests, please give us as much notice (i.e., preferred deadline) to when the data are needed. An automated response e-mail from the data request system will be sent to the e-mail address you provide when your request has been successfully submitted. After review, you may be contacted via telephone or email to clarify questions about or details of your request.
Analysis Data Dictionary
This agreement protects the confidentiality and privacy of JHS participants and their families, investigators granted access to the biological materials, genetic analysis data, and clinical data collected by the JHS. These data and materials have been stripped of all personal identifiers. Failure to comply with this Distribution Agreement could result in denial of further access to JHS samples and data. Violation of the confidentiality requirements of this agreement is considered a breach of confidentiality and may leave requesting investigators liable to legal action on the part of JHS participants, their families, or the United States Government.