Strong Heart Study - The largest epidemiologic study of cardiovascular disease in American Indians

Study Data

Strong Heart Study data are shared with researchers following Resource and Data Sharing Policies, which include review and approval from the Strong Heart Steering Committee and Strong Heart Study participating tribes.   The participating tribes of the Strong Heart Study continue to follow established protocols for Resource and Data Sharing to efficiently review and approve data requests which include those from ancillary and sub-studies, as well as authors of approved paper proposals.   


If you need to request basic summary statistics for SHS data, please use this link to submit the request: SHS Summary Statistics Request Form

SHS DATA SHARING POLICY FOR MANUSCRIPT SUBMISSION

The data were collected, analyzed, and reported under agreements made with the sovereign tribal nations that have partnered in this research, which preclude routine modes of data sharing. Requests to access the dataset from qualified researchers trained in human subject confidentiality protocols may be sent to the Strong Heart Study Coordinating Center at https://strongheartstudy.org/. Requests will be reviewed by tribal research partners before data may be released. This policy is consistent with the “NIH Policy for Data Management and Sharing: Responsible Management and Sharing of American Indian/Alaska Native Participant Data.”1

1. NIH. Supplemental Information to the NIH Policy for Data Management and Sharing: Responsible Management and Sharing of American Indian/Alaska Native Participant Data. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-22-214.html#:~:text=NIH%20recognizes%20that%20conducting%20biomedical,Tribes%5Biii%5D%20and%20communities.



Please refer to the following sections for additional information:

Data and Summary Statistics Request Policy

A. DATA

  1. SHS data will be distributed only to investigators with paper proposals approved by the SHS Publications and Presentations Committee (P&P), or  sub-studies or ancillary studies that have been approved by the SHS Steering Committee (SC) and are funded. Approval of a study by the P&P or SC does not mean that the PI of the study will have the needed data. The SHS SC reserves the right to not distribute the data to the study PI and to designate a SHS center to perform the needed analysis.
  2. The P&P or SC will notify the Coordinating Center (CC) of the approval of any substudies and ancillary studies immediately after the approval by sending a copy of the approval letter from the P&P or the Chair of SC to the Coordinating Center (CC).
  3.  When funding of a sub-study or ancillary study is secured, the investigator will notify the SHS CC and data request will be submitted to the CC at appropriate stages. At each stage the requestor can only request the data needed at that time.
  4. A requestor must complete the online SHS Data Request form and the SHS Data Distribution Agreement form, and then must upload both completed forms and attach a copy of the protocol explaining the study and intended uses of the requested SHS data through the REDCap survey form.
  5. The requestor must detail the specifics of the data request (variable names, Phase, Center, etc.) on the data request form.
  6. The CC will check the availability of the requested data and notify the requestor if any data are not available.
  7. Unless a data request is complex or requires additional work (for example, development of new derived variables), the CC will make the data available for secure transmission usually in approximately 2 weeks after approval of the request by the CC. The requestor must contact CC to arrange the details of the transmission.
  8. If the request is complex, more time may be required; the requestor will be given an estimate of the earliest transmission date.
  9. For each paper resulting from a sub-study or ancillary study using SHS data, the requestor will comply with the SHS publication policy.
  10. The CC will maintain a list of approved data requests and the status of progress in fulfilling the requests. The list will be maintained on the SHS website.


B. SUMMARY STATISTICS

Summary statistics of SHS data may be requested by submitting a detailed description to the SHS Steering Committee for review and approval. The description must include the purpose of the request and describe in detail the summary statistics needed. If the request is approved, the SC will forward the request to the CC. The CC will review the request, notify the requestor of the time needed to calculate the statistics and deliver them in a timely manner. No raw or derived data will be distributed to requestors for the purpose of calculating summary statistics.

Please submit the summary statistics request using this link : SHS Summary Statistics Request Form

 

SHS Data Matrix : Please reference this summary to determine which procedures and interviews were conducted during each phase of the SHS.

 

Data Dictionaries for All Phases

Data Dictionaries for Sub studies and Ancillary Studies

Cancer Event Data of the Strong Heart Study/Strong Heart Family Study (PDF)

 

Strong Heart Study Data Book : A Report to American Indians Communities.*

 
*The Data Book, published in 2001, provides an overview of enrollment, demographics, mortality, morbidity, knowledge of CVD factors, biologic risk factors for CVD, diabetes prevalence and diabetes-related variables, and environmental and lifestyle risk factors based on information collected during Phase I.