The SRTR responds to data requests from the transplant community and the general public, in addition to those from OPTN committees and government agencies. Requests from the community and general public fall into four categories:

• Request for Information (RFI)
• Request for Data Analysis (RDA)
• Standard Analysis Files / Custom Data Files (SAF/CDF)
• Program-Specific Report Data (PSR)

Communication regarding these requests can be sent directly to the SRTR by way of our contact form, or by phone to 1-800-830-9664.

The SRTR will prioritize all non-government data requests and respond to the requester with a time and cost estimate within two weeks of receipt. For requests that are routine and require minimal preparation or programming to obtain the data (i.e., less than 4 hours), requesters will receive data within 30 days. For requests are more intensive and require several person days of effort to prepare, the SRTR will provide the requester a reasonable timeframe in which data will be provided. Fees will be charged to non-Federal entities to cover the reasonable costs of providing data or data analyses that are not routine (i.e. require more than 4 hours of effort). All requests for detailed data that require a statement outlining the analyses you intend to complete and a Data Use Agreement (e.g. person-level and center-level data) will have associated fees.

Please note that the SRTR does not provide medical advice, diagnosis, or treatment. The contents of the SRTR site, such as text, graphics, images, and other material contained on the site, as well as the contents of responses to data requests are for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. You should never disregard professional medical advice or delay in consulting with your physician due to information provided by the SRTR.

If you have questions about detailed data analyses, such as those included in Program and OPO Specific Reports or the Simulation Allocation Models, or if you would like to request data or analyses to help address your questions, please contact the Scientific Registry of Transplant Recipients at srtr@ArborResearch.org or 1-800-830-9664. If you have questions about the development of solid organ allocation policy and data collection, or if you would like descriptive data that may help address your questions, please contact the Organ Procurement and Transplantation Network (OPTN) via the UNOS Help Desk (1-800-978-4334).

The SRTR responds to data requests from the transplant community and the general public, in addition to those from OPTN committees and government agencies. These requests fall into two categories:

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Requests for Information (RFI)

• Often are answered using published sources (e.g., Annual Report or Program-Specific Reports).
  
• SRTR-established statistical methods.
  
• Reformulation of SRTR-published statistics.
  
• Simple computer tabulations.
  
• Minimal original programming.
  
• Little to no cost.
  
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Requests for Data Analysis (RDA)

• More complex analyses performed by SRTR staff
  
• Statistical and medical review
  
• Substantial planning, programming, documenting, and coordinating, usually totaling more than eight (8) hours of effort
  
• Analyses are prioritized according to SRTR resource availability.
  
• Hourly fee
  
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Standard Analysis Files

These files are available to researchers wishing to perform their own data analyses. These files, which are accompanied by an electronic data dictionary and a limited amount of technical support from SRTR staff, include data elements collected by the OPTN and supplemented with other sources, as well as some calculated analytical variables. The Simulated Allocation Models (SAMs) are also available by similar request.

• Researchers perform their own analyses
  
• Requires basic knowledge of SAS or statistical software
  
• Request process involves submission of a Data Release Agreement and supporting materials
  
• Fixed fee includes SAS files, documentation, and some support from SRTR staff
  
• What do SAFs contain?
  
• How do I request a SAF?
  
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Custom Data Files

• All items from SAF describe, plus --
  
• Researcher's data needs beyond the SAFs, or analysis in a more specific format
  
• Tailored data file, providing only relevant data for proposed research
  
• May include fields not available in SAFs
  
• Hourly fee includes preparation of SAS files, documentation, and some support from the SRTR staff
  
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Analytic Collaboration with the SRTR

To maximize the benefit to the transplant community from our research resources, researchers from the SRTR may collaborate with external researchers, with both benefiting from added perspectives and expertise. Some types of data requests may naturally evolve into scientific collaborations progressing toward published peer-reviewed articles, books, or other policy work. In order for SRTR principals and staff to participate in research collaboration, the proposed work must fit into the SRTR’s research agenda as approved and funded by HRSA.

Requests for Data Analysis, as well as those that would require Standard Analysis Files (SAFs) or Custom Data Files (CDFs), may be considered for collaboration between the requester and the SRTR, by mutual agreement. Outside investigators may elect to conduct their own analyses using SAFs or CDFs. Under a collaborative relationship, the analyses will be carried out by the SRTR. If a collaborative approach is requested, the research topic must be reviewed to ensure that it is contained in the SRTR/HRSA annual research plan priority list. In such cases, the SRTR may work in a collaborative fashion with the outside investigator.

It is important to note that collaboration with the SRTR on research projects requires a recognition that the research priorities of the SRTR contract are dynamic, which may result either in delays in progress on the research project in light of other priorities, or acceleration in the event that it feeds into other high priority SRTR work. The SRTR reserves the right to set the terms and timeline for collaboration and the right to publish and utilize results. It is the responsibility of the SRTR, with oversight from HRSA, to exercise discretion over the use of government funds for research.

Collaborative efforts may include but are not limited to:

• Any publication or presentation of information directly related to SRTR work
• Research in support of SRTR products (Program-Specific Reports, SRTR Report on the State of Transplantation and OPTN/SRTR Annual Report, etc.)
• Exploratory research that may impact SRTR work or products

The SRTR welcomes collaboration with researchers in the community and is sensitive to intellectually property issues. We also realize that the community may benefit from parallel research if resources allow. Both the SRTR and requesters of analyses and data files must also realize that a decision not to pursue collaboration, on the part of either the SRTR or the investigator, does not infer any judgment about the importance of the proposed project and will in no way interfere with either or both parties from pursuing similar research questions.

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