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Data request instructions

The OPTN responds to requests from the general public and OPTN members for OPTN data. This includes standard analysis datasets and datasets that may or may not contain patient-identified data, an OPTN Member’s own data, and aggregate OPTN data.

Guidelines for General Public: In order for the general public to submit a request, the requester will need to go to:  https://optn.transplant.hrsa.gov/data/request-data/ and fill out a formal request for this information. 

Guidelines for OPTN Members: OPTN Members with UNetSM access may submit a request by logging into UNet, scrolling to the bottom of the page and clicking “add a New Request”. OPTN Members without UNet access can submit requests through the OPTN website as described above.

STAR file

STAR (Standard Transplant Analysis and Research) files are limited datasets that contain patient-level information about transplant recipients, deceased and living donors, and waiting list candidates back to 10/1/1987. In addition to the standard STAR file, the OPTN provides customized STAR files and other datasets to the public and OPTN members for bona fide research or analysis purposes. STAR files are updated quarterly.

All requests for STAR files require a signed data use agreement and the requester must let us know the type of software they will be using.   These files are normally shipped to the public and OPTN members via mail.

  1. Requester will need to provide brief description for purpose of requesting the STAR File and what type of software they will be using. Data will be provided in SAS, STATA, and tab delimited formats.
  2. The OPTN will respond by requesting that a data use agreement be signed and inform them of a fee if appropriate.
  3. UNOS staff coordinate with members of the public on the specifics of their request.  If the fee is applicable, they will be invoiced via PayPal or the UNOS Finance Department will coordinate payment.
  4. Once the fee is paid, UNOS will either send the data via secure email or ship the data.

Patient-Identified Datasets:

Requests from OPTN members and the general public for data that contain or potentially contain personally identifiable information (PII) need to be initially submitted the same way as the other requests, members should go through the UNet portal or the OPTN website, and the general public through the OPTN website. 

  1. These requests will then be triaged differently than other requests. Requests for patient-identified OPTN data for research purposes require:
    1. A signed HRSA DUA
    2. Evidence of IRB approval or exemption for the project
    3. A brief research plan that explains the need for patient identifiers
    4. Information related to data security

UNOS staff will coordinate with the researcher on getting these submitted.

  1. Requests are first reviewed by UNOS staff to assess the researchers’ intent and clarify any issues in their request that need to be addressed prior to submission to HRSA.
  2.  HRSA retains the authority to release patient-identified data to researchers and will review, and approve researchers’ requests if the project makes appropriate use of the identified data. HRSA approval, or any feedback following a denial, will be communicated back to the researcher by UNOS staff
  3. Once these requests are approved by HRSA, the OPTN will invoice (if applicable) through PayPal or our Finance Department.
  4. Once the OPTN has received payment, the programming of the request begins.  Upon completion, the data is shipped to the requester.

Aggregated data:

Requests from OPTN members and the general public for aggregated data should be submitted the same way as the other requests, the general public and OPTN Members can submit through the OPTN website. OPTN Members with UNet access may also submit through UNet. 

  1. Requesters must provide a brief description with specifics about organ, time period, donor types and transplant types etc. OPTN members looking for center-specific data should indicate that information as well.
  2. UNOS staff coordinate with requesters on the specifics of their request. If a fee is applicable, they will be invoiced via PayPal or the UNOS Finance Department will coordinate payment.
  3. Once the fee is paid, the OPTN will either send the data via secure email or via a mailing service.

Technical Assistance

For assistance with submitting a request, OPTN Members and the general public can email datarequest@unos.org. For technical assistance with the STAR file, and specifically the variables contained within, use STARFile@unos.org. Requestors receive supporting documentation with STAR files that describes the variables contained within the file.

Fees

Fees for STAR files and other datasets to scientific community and general public are:

Standard STAR File

Description: The standard STAR file, updated quarterly.

Fee: No fee

Custom STAR File or patient-level dataset

Description: Modified OPTN STAR file with either additional data variables or limited to specific records based on the requirements of the researcher.

Fee: Fees based on level of effort:

  • Small: $500
  • Large: $1,000

Any requests beyond Large will be based on level of effort.

Patient-identified datasets for bona fide research

Description: Any dataset with PII or requiring patient-level linkage to another data source. Requires coordination by UNOS staff and approval from HRSA. Fee does not apply to patient-identified data that has been assembled, stored, or transformed from data originally supplied by that member.

 Fee: $1500 processing fee in addition to level of effort:

  • Small: $500
  • Large: $1,000

Any requests beyond Large will be based on level of effort.

Description of level of effort for custom datasets and patient-identified datasets:

Small: 

  • Includes datasets that include additional variables available on standard forms. Including but not limited to DonorNet lab variables, Age in days, and Zip Codes for patient-identified datasets. Small requests take less than 4 hours to program.

Large:

  • Includes datasets that require linkages and match run datasets. Including but not limited to potential transplant recipient (PTR)/match run data, comment fields from DonorNet, and historical variables that are no longer collected. Large requests take 4 to 10 hours to program.

 These fees apply to datasets containing patient-level limited datasets or patient-identified data for the purpose of research. Dataset requests include supporting documentation and technical support. This does not include any additional features including, but not limited to:

  • Inferential statistical analyses and multivariable modeling.
  • Visualizations
  • Custom reports or written explanations of the results of any data analyses
  • Assistance with study design
  • Linkages to non-OPTN sources of data

Fees for data requests from the general public are:

Aggregate OPTN Data are available to the general public through the following venues:

  • The general public can create advanced reports on the OPTN website using regularly updated OPTN data.
  • OPTN Members with access to UNet can use the UNOS Data Services Portal to view and interact with data from their institution using spreadsheets, standard reports, and data visualization software.
  • For all other data requests, aggregate OPTN data are provided in table format to OPTN Members and the general public by submitting a request on the OPTN website or through UNet for OPTN Members. Additionally, OPTN Members can submit a data request for patient-identified data from their own institution.

DataDescriptionFee
Routine and complex data requests Aggregate data

Fees based on level of effort:

  • Routine: No fee
  • Complex: $750

Any requests beyond this will be based on level of effort.

Description of level of effort for routine and complex data requests:

Routine:

  • This includes work like custom tabulations that are not available on website, custom formats/grouping for variables, and mean/median for variables. Including but not limited to variables like transplant months and newly collected variables. Routine requests take less than 4 hours to program.

Complex:

  • This includes work like tabulations for match run data and tabulations for post-transplant outcomes. Included but not limited to variables like reason for offer rejection and post-transplant malignancies. Complex requests take 4-10 hours to program.

This does not include any additional features including, but not limited to:

  • Inferential statistical analyses and multivariable modeling.
  • Visualizations • Custom reports or written summaries of the data
  • Tabulations from OPTN data linked with non-OPTN data sources.
  • Interpretation of data

Additional Fees

This fee structure is based on the normal turnaround of 3-4 weeks for requests requiring programming. In cases of a more urgent need, an expedited processing fee (minimum of $500) may be available dependent on the timing and resources required.

Requestors outside the US will pay additional for shipping of datasets that are too large to be sent via secure email.