Data Requests

Requests for information are categorized into simple or complex requests, depending on the level of effort required to fulfill the request.

Simple requests for information are those that SRTR estimates can be fulfilled with less than 4 hours of analysis time by SRTR staff and do not result in patient-level datasets but rather aggregated analytic results. SRTR does not assess a fee for fulfilling simple requests for information.

Examples of simple requests for information include:

• The number of programs that have performed heart-kidney transplants in children in the past 5 years
• The distribution of donor ages by organ procurement organization (OPO) over a specific period of time
• Annual lung transplant counts by age group and type (ie, single vs bilateral)

Please make simple requests for information by emailing SRTR at srtr@srtr.org. In your request, please include the following information:

• Contact information, including your name, business/organization name, phone number, and email address
• Description of information requested:

• Patient population. Please be specific. (eg, organ type, age group, age at listing or transplant, inclusion and exclusion criteria)
  • Timeframe (eg, January 1, 2007, to December 31, 2017)
• Outcome(s) in which you are interested. Include specific definitions.

Requests for information that are estimated to exceed 4 hours of SRTR staff time are fulfilled for a fee and as SRTR resources permit. All requests will be considered on an individual basis and estimated costs communicated to the requestor in advance. SRTR charges $125 per hour for fulfilling complex requests for information.

Requests for patient-level datasets fall into three primary categories:

1. Requests for SRTR Standard Analysis Files (SAFs)
2. Requests for Enhanced SRTR SAFs with additional data tables beyond the standard files
3. Requests for linkages of SRTR SAFs with external data sources

SRTR releases Standard Analysis Files (SAFs) for bona fide research or analysis purposes per the OPTN Final Rule section 121.11. Requests for SAFs require a signed data use agreement (DUA). DUAs must be renewed every 3 years throughout the duration of the approved use. Costs of the SRTR SAFs are detailed below.

SAFs contain a standardized set of data tables sufficient to satisfy the needs of most researchers. Additional data tables collected by the OPTN but not included in the SAFs may be requested. Examples include requests for match run data or additional data contained within DonorNet^SM. Requests for enhanced SAFs require a signed DUA, and the requestor will be assessed an additional fee to cover SRTR staff time needed to construct the enhanced SAF. Costs of enhanced SAFs are detailed below.

Requests that require linkages to an external data source or use of personal identifiers to link with other public or private data sources can often be accommodated. To protect the private information of individuals in the transplant registry, SRTR performs the linkages and analyses that require use of personal identifiers. SRTR releases the resulting data as summary data or individual data with encrypted identifiers. In rare circumstances, identifiers may be released to other government agencies or investigators for linkage upon showing that the research design requires such data for matching or other purposes and that appropriate confidentiality protections, including destruction of patient identifiers upon completion of matching, will be followed. All linkage data requests require a DUA and approval by the requestor's Institutional Review Board (IRB). The request must also be authorized by HRSA. This review process may take as long as 30 days. Costs for linkages are detailed below.