Data Requests

SRTR Data Release Policy


General

The Scientific Registry of Transplant Recipients (SRTR) responds to reasonable requests from the public for data to support bona fide research or analyses in the field of organ transplantation to the extent resources permit (OPTN Final Rule section 121.11). SRTR makes every attempt to fulfill requests for data within 30 days from the date the request is finalized. Data requests generally fall within two broad categories:

  1. Requests for information that do not require patient-level datasets
  2. Requests for data to support research and analysis

1. Requests for Information

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

1.a. Simple Requests for Information

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.

1.b. Complex Requests for Information

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.

2. Requests for Data

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

2.a. Requests for SRTR Standard Analysis Files (SAFs)

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.

2.b. Requests for Enhanced Standard Analytic Files

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 DonorNetSM. 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.

2.c. Requests for Linkages

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.

Making a Request for Data

Please request data from SRTR by emailing srtr@srtr.org. In your request, please include your contact information (ie, name, business/organization name, mailing address, phone number, and email address). Once we receive the initial request, we supply the forms necessary to complete the request. All data requests requiring a signed DUA must also have a data security plan and research plan. 

Costs for SRTR Data

Standard Analysis Files cost $1,000; each additional, updated SAF for use under an existing DUA costs $500. For enhanced SAFs and linkage requests, SRTR provides an estimate of the cost of the request. An estimated work-effort and payment agreement must be obtained before programming proceeds. Work is charged at $125 per hour, in addition to the cost of the SAF.

A student discount is available for current students using SRTR data to fulfill requirements of a degree program and medical doctors currently in residency or fellowship programs. Documentation of current academic status is required, and the student must be named as the principal investigator. For qualifying students, the cost of a SAF is $200. The student discount does not apply to requests requiring additional SRTR programming (ie, requests for enhanced SAFs or requests for linkages). 

Please contact SRTR for details about adding investigators to a DUA, making an addendum to a current DUA, and other situations not addressed in this document.

Technical Assistance

For technical assistance requests, please visit the designated page.