The OPTN responds to requests from the general public and OPTN members for OPTN data. Data can be provided in datasets (STAR files, custom limited datasets, or patient identified datasets) so that requesters can perform their own analysis, or in static reports (tables, summaries, etc).
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 may request data they have previously submitted at any time, without charge. OPTN Members with UNetSM access may submit a request by logging into UNetSM, scrolling to the bottom of the page and clicking “add a New Request.” OPTN Members without UNetSM access can submit requests through the same link on the OPTN website as described above for the general public: https://optn.transplant.hrsa.gov/data/request-data/
Data request types
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. STAR files are updated quarterly and can be requested using the OPTN Data Request page on the OPTN website for the public or via UNetSM for OPTN Members.
All STAR file requests require a signed data use agreement (DUA) and are delivered via a secure electronic format.
- Access the Data Requests Page of the OPTN website (or UNetSM) and complete all fields, including a brief description of the purpose of the request and what type of software you will be using. Data can be provided in SAS, STATA, and tab delimited formats.
- A UNOS staff member will respond to the requester via email within five (5) business days with a blank DUA to be completed by the requester. UNOS staff will coordinate via email or phone with the requester on the specifics of their request.
- Once a UNOS staff member receives the signed DUA, the standard STAR file will be delivered securely via an electronic method within 30 days of receiving the signed DUA.
Custom Limited Datasets
Custom limited datasets are other requests for non-patient identified data that include:
- Custom STAR file - standard STAR file with either additional data variables or limited to specific records based on the requirements of the researcher.
- Ad hoc data request for custom dataset only including specific records and/or specific variables
Custom Limited Datasets are completed via a team of analysts and can be requested using the OPTN Data Request page on the OPTN website for the public or via UNetSM for OPTN Members.
All requests for limited datasets require a signed data use agreement (DUA) and are delivered via a secure electronic format. Once a UNOS staff member receives the request, they will reach out via email with a blank DUA.
- Access the Data Requests Page of the OPTN website (or UNetSM) and complete all fields, including a brief description of the purpose of the request, the variables needed, and a desired timeframe.
- A UNOS staff member will respond to the requester via email within five (5) business days with a DUA to be completed the requester. UNOS staff will coordinate via email or phone with members of the public on the specifics of their request.
- A team of analysts will consult and determine the level of effort and applicable fee if necessary. If required, the requester will be invoiced via PayPal or directly by the UNOS Finance Department.
- Once a UNOS staff member receives both a signed DUA and payment (if required), the custom limited dataset will be delivered securely via an electronic method within 30 days of receiving the signed DUA.
Patient-identified requests are datasets to be used for bona fide research that include patient identifiers, or possibly identifiable information, and require HRSA approval prior to release. All requests for patient identifiable information require a data use agreement (DUA), security plan, research plan, and an approved IRB to be submitted to HRSA for approval.
If you are unsure if the information you are asking for falls into this category, a team of UNOS staff members can review the request and determine if HRSA approval is necessary. Patient-identified data can be requested using the OPTN Data Request page for the public or UNetSM for OPTN Members.
- Access the Data Requests Page of the OPTN website (or UNetSM) and complete all fields, including a brief description of the purpose of the request and the variable and cohort of records required.
- A UNOS staff member determines if the request is for patient-identifiable information and will contact the requester for a signed data use agreement, research plan, security plan, and approved IRB.
- A group of UNOS staff members collectively review the documents for the following:
UNOS staff reach out to the requester if any of the above issues are identified.
- Confirm that the variables requested are collected by the OPTN
- Confirm that the Patient Identified Information requested are needed for the research
- Determine if the requested variables are collected during a specific cohort.
- Once the documents are finalized, a UNOS staff member submits the request to HRSA for approval and provides the level of effort and estimated associated costs.
- After HRSA approval, a UNOS staff member invoices the requester via PayPal or directly by the UNOS Finance Department. Once paid, programming begins and the final dataset is delivered securely via an electronic method.
Aggregated data is non-patient level data – usually summary statistics, counts, or other data that summarizes multiple patients or groups that are delivered as static reports. Requesters must provide a brief description with specifics about the request to include items such as organ, time period, donor types and transplant types. OPTN Members looking for center-specific data about their own institution should indicate that as well.
Aggregated data can be requested using the OPTN Data Request page on the OPTN website for the public or via UNetSM for OPTN Members.
- A UNOS staff member will coordinate with requesters via email or phone call on the specifics of their request. If a fee is applicable, they will be invoiced via PayPal or directly by the UNOS Finance Department.
- Once the fee is paid, the aggregated data will be delivered securely via an electronic method within 30 days
For assistance with submitting a request, OPTN Members and the general public can email firstname.lastname@example.org. For technical assistance with the STAR file, and specifically the variables contained within, researchers can email STARFile@unos.org Requestors receive supporting documentation (Excel spreadsheet) with STAR files that describes the variables contained within the file.
|STAR file||The standard STAR file, updated quarterly.||$0|
|Custom Limited Dataset||Custom STAR file, or ad hoc dataset request that includes specific variables or records.||Fees based on level of effort:
Any requests beyond Large will be based on level of effort
|Patient-Identified Dataset||Any dataset with PII or requiring patient-level linkage to another data source. Requires coordination by UNOS staff and approval from HRSA. Fee and HRSA approval does not apply to patient-identified data that has been assembled, stored, or transformed from data originally supplied by that member.||$1500 processing fee in addition to level of programming effort:
Any requests beyond Large will be based on level of effort
|Aggregate Data||Routine and complex tabulations||Fees based on level of effort:
Any requests beyond this will be based on level of effort
|Center Data||OPTN members requesting their own data||$0|
Any data request that takes longer than an estimated 10 hours to program will be charged an additional $100/hr in addition to the large data request fee.
Description of level of effort for Custom Limited Datasets and Patient-Identified Datasets:
Level of effort is determined by the UNOS staff. The team meets weekly to determine the level of effort for each data request. Past experiences with the data is used to make an educated guess on the number of hours it will take to complete each request. The variables requested, number of variables, format of the report, the frequency of the delivery, and the complexity involved with querying those variables all directly impact that decision. For more complex requests, UNOS subject matter experts are consulted.
- Small requests take less than 4 hours to program.
- Ex. Custom variables that are not included in the standard STAR file, such as: variable currently not in collection, date of birth, zip codes and/or donor ID with HRSA approval.
- Medium requests take 4 to 7 hours to program.
- Ex. Individual organ match run data including candidate responses.
- Large requests take 7-10 hours to program.
- Ex. Complex match run data with response time stamps and/or multiple organ match runs.
Description of level of effort for Aggregate Data:
- This includes work like custom tabulations that are not available on the OPTN website, custom formats/grouping for variables, and mean/median values for numeric variables. Routine requests take less than 4 hours to program.
- This includes work like tabulations for match run data and tabulations for post- transplant outcomes. Includes but not limited to tabulations of variables like reason for offer refusal and incidence of post-transplant malignancies. Complex requests take 4-10 hours to program.
These fees apply to all of the above mentioned data request types. Dataset requests include supporting documentation and technical support. These data requests do not include, but are not limited to, any additional features including:
- Inferential statistical analyses and multivariable modeling
- Custom reports or written explanations of the results of any data analyses
- Assistance with study design
- Tabulations from OPTN data linked with non-OPTN data sources.
- Interpretation of data
This fee structure is based on the standard turnaround time of 30 days 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.