Process

This data release agreement along with a separate 2-3 page research plan, or plan describing the analyses for which the data will be used, must be signed and submitted to the SRTR, and approved by the SRTR prior to receiving any program-specific data (the plan can be sent to Arbor Research by mail, fax or e-mail). If you do not have the resources to do your own analyses, you may wish to begin by viewing the Annual Report and the Program-Specific Reports

Data Release

Requesters should be aware that data are generally released as Microsoft Excel or SAS data sets. Some of these data are complex and knowledge of statistical computing software is imperative; the SRTR cannot provide basic computing support.

Data Element

The data available in Program-Specific Reports are based on data elements that are collected by the Organ Procurement Transplantation Network (OPTN), partly supplemented by some other data sources and calculated analysis variables. The data collection worksheets for the primary data source, the OPTN, are available in the OPTN/SRTR Annual Report.

The specific elements in the data release will respond directly to the research request outline in the DUA. They will be taken directly from the contents of the published RFI and Program Specific Reports for OPOs or Transplant Programs. The SRTR may add, at its discretion, unpublished program-specific numbers with a full understanding of how these numbers may be useful and review of whether a notification of programs is necessary. The data files will also include any comments submitted by the programs or OPOs.

Timeline

The approval process for a data release of SRTR Program-Specific Reports is one to four weeks; given that a detailed research plan or plan for us of the data is provided. After approval, receipt of the files will generally take 2 weeks after full payment is received.

The SRTR will work with the user to troubleshoot and anticipate any potential problems in reaching the approval stage of the data release process. Therefore, the more detail provided to the SRTR initially, the more likely the process will advance quickly. The high volume of data requests received by the SRTR is responded to in the order received.

Fees

The fees for most program-specific data releases range starts from $2800 (CY 2007) for each cohort of data released, with incremental additions for additional cohorts or more complex variations in format. An estimate for the files will be provided upon approval of your research plan or plan for use of the data. Payment for the program-specific data must be received prior to the release of data. Please notify the SRTR if you cannot meet these financial obligations, and your request will not be processed.