Data definition updates
UNOS provides a list of revised definitions to answer member questions about existing data fields and to clarify new requirements. This effort aims to provide clear, concise field definitions, improve quality of data, and provide transparency into changes. Clarifications are intended to provide guidance for future data entry. Members are not required to amend data submitted before the collection date. The process to create revised field definitions includes reviews by multidisciplinary UNOS staff and the OPTN Data Advisory Committee.
A cross-functional team of United Network for Organ Sharing staff and OPTN members continues to work on a data governance initiative to improve the consistency and quality of OPTN data collection.
The set of field definitions is published in UNet online help.
Where to find information within Secure Enterprise Help Documentation
- Access Secure EnterpriseSM and then choose any application.
- On the menu, choose Help and click Online Help.
- Summary of field definition changes can be found under History of Definition Changes.
- To view a definition for every field in each form, go to Online Help > Field Definitions.
Submit data / field definition questions
We have made it easier for you to submit data / field definition questions! Check out the new enhancements to Service Portal.
You can also contact UNet help desk at (800) 978-4334 or [email protected].
UNetSM
Enter data on candidates, recipients and donors. If you can’t access the site, your hospital or OPO site administrator can help you.
Most recent data definition updates
March 13, 2024
| Data Element | System | Form | Description |
| Left Kidney Biopsy, Right Kidney Biopsy |
| Donor record– Deceased Donor Registration | Provided guidance on which biopsy results to enter if multiple were performed. |
| Patient on Ventricular Assist Device |
| Transplant Candidate Registration – Heart, Heart/Lung | Clarified timeframe for ventricular assist device usage. |
| Events Prior to Discharge |
| Transplant Recipient Registration – Heart, Lung, Heart/Lung | Clarified timeframe for stroke and dialysis. |
| Pretransplant Titer Information |
| Transplant Recipient Registration – Heart, Lung, Heart/Lung | Clarified definition of “Not Taken”. |
| Chronic Steroid Use |
| Transplant Recipient Registration – Heart, Lung, Heart/Lung | Clarified when to answer “Yes” for Chronic Steroid Use. |
Previous updates
December 1, 2023
| Data Element | System | Form | Description |
| According to the OPTN policy in effect, does the donor have risk factors for blood-borne disease transmission? |
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| Provided guidance on answering “Unknown medical or social history” question. |
| Date: Last Seen, Retransplanted or Death | TIEDI® | Transplant Recipient Registration – Intestine, Liver, Kidney, Pancreas, Kidney-Pancreas, Heart, Lung, Heart-Lung Transplant Recipient Follow-up – Intestine, Liver, Kidney, Pancreas, Kidney-Pancreas, Heart, Lung, Heart-Lung | Provided guidance on reporting graft failure before an expected form is available. |
| Date of Discharge from Tx Center | TIEDI® | Transplant Recipient Registration – Intestine, Liver, Kidney, Pancreas, Kidney-Pancreas, Heart, Lung, Heart-Lung Transplant Recipient Follow-up – Intestine, Liver, Kidney, Pancreas, Kidney-Pancreas, Heart, Lung, Heart-Lung | Clarified definition of hospital stay. |
| Patient on Life Support | TIEDI® | Transplant Candidate Registration -Heart, Lung, Heart-Lung, Intestine, Liver Transplant Recipient Registration – Heart, Lung, Heart-Lung, Intestine, Liver | Clarified the life support timeframe. |
| Patient on Ventricular Assist Device | TIEDI® | Transplant Candidate Registration – Heart, Heart-Lung Transplant Recipient Registration – Heart, Heart-Lung | Clarified the timeframe of patient being on VAD. |
| Most Recent Hemodynamics | TIEDI® | Transplant Candidate Registration – Heart, Lung, Heart-Lung Transplant Recipient Registration – Heart, Lung, Heart-Lung | Provided guidance on hemodynamic values timeframe and method for CO value determination. |
| Events occurring between listing and transplant | TIEDI® | Transplant Recipient Registration – Lung, Heart-Lung | Provided guidance on the timeframe. |
| Prior Cardiac Surgery (non-transplant) | TIEDI® | Transplant Candidate Registration – Heart, Lung, Heart-Lung, Transplant Recipient Registration – Heart, Lung, Heart-Lung | Provided guidance on the timeframe. |
| Episode of Ventilatory Support | TIEDI® | Transplant Recipient Registration – Heart, Lung, Heart-Lung | Provided clarification for ”at time of transplant” response option. |
| Lung Received at Transplant Center | TIEDI® | Transplant Recipient Registration – Lung, Heart-Lung | Provided clarification on “Received at center on ice” response option. |
May 5, 2023
| Data Element | System | Form | Description |
| Viral Detection | TIEDI® | Transplant Recipient Follow-Up – All Organs (Adult, Ped) | Provided clarification on testing requirement timelines. |
December 19, 2022
| Data Element | System | Form | Description |
| HBV Vaccination Status | TIEDI® | Transplant Recipient Registration | Updated to align with policy requirements. |
November 30, 2022
| Data Element | System | Form | Description |
| HBV Vaccination Status | TIEDI® | Transplant Recipient Registration | Added information to define full vaccination series, provide more information on reasons why vaccination was not performed, and state the intention for data collection. |
October 26, 2022
| Data Element | System | Form | Description |
| Working for Income | TIEDI® | Living Donor Registration, Living Donor Follow-up, Transplant Candidate Registration, Transplant Recipient Registration, Transplant Recipient Follow-up – Adult | Added information to clarify what constitutes working for income. |
| Date Last Seen or Death | TIEDI® | Living Donor Registration | Provided clarification on how the date can be obtained. |
| Date: Last Seen, Retransplanted or Death | TIEDI® | Transplant Recipient Registration, Transplant Recipient Follow-up – Adult/Ped | Provided clarification on how the date can be obtained. |
| Unlocking a Form | TIEDI® | Unlocking a form | Provided additional information for explanation codes and approved by fields. |
January 14, 2022
| Data Element | System | Form | Description |
| Post Transplant Ventilator Support | TIEDI® | Transplant Recipient Registration – Lung, Heart/Lung (Adult/Ped) | Provided clarification on type and duration of ventilator support. |
| Diabetes | TIEDI® | Living Donor Registration | Updated to provide timeframe of diabetes |
September 24, 2021
| Data Element | System | Form | Description |
| NAT (Nucleic Acid Test) Results | TIEDI® | Transplant Recipient Registration – All organs (Adult/Ped) | Provided clarification regarding RNA or DNA for NAT tests. |
| Cigarette Use (>20 pack years) – Ever | TIEDI® | Deceased Donor Registration | Provided language to clarify data field for when donor used for exactly 20 pack years. |
August 6, 2021
| Data Element | System | Form | Description |
| Height and Weight | TIEDI® | Transplant Candidate Registration, Transplant Recipient Registration, Living Donor Registration, Deceased Donor Registration | Provided guidance on entering height/weight data when/if multiple measurements are taken. |
| Gender | WaitlistSM | Add/Edit/Remove Candidate Record, PELD Calculator | Added intent to collect biologic and physiologic traits at birth to align with DonorNet and TIEDI. |
| Number of Previous Solid Organ Transplants | WaitlistSM | Add Kidney Candidate, Add Kidney/Pancreas Candidate Record | Provided examples of multi-organ transplants that are considered as one solid organ transplant. |
January 15, 2021
| Data Element | System | Form | Description |
| Exercise Oxygen Consumption | TIEDI® | TCR | Added timeframe for reporting results. |
| Serum Albumin | TIEDI® | TCR, TRR, LDR, LDF | Added timeframe for reporting results. |
| Serum Creatinine | TIEDI® | TCR, TRR, TRF, LDR, LDF | Added timeframe for reporting results. |
October 15, 2020
| Data Element | System | Form | Description |
| Prior Cardiac Surgery (non-transplant) | TIEDI® | TCR, TRR – Adult Heart, Lung and Heart/Lung | Provided clarification for types of cardiac surgeries entered in this field. |
| FEV1, FVC, FEF25-75 | TIEDI® | TRF – Lung and Heart/Lung | Added note providing examples of pulmonary function tests. |
July 15, 2020
| Data Element | System | Form | Description |
| Patient Need Dialysis within First Week | TIEDI® | TRR – Kidney, Kidney/Pancreas | Note added to include all forms of continuous renal replacement therapy (CRRT) as dialysis for this field. |
| Any Extracorporeal Support Given (ECMO, etc.) | TIEDI | DDR | Provided clarification for ECMO support. |
| Has the patient been hospitalized since the last patient status date | TIEDI | TRF – Thoracic – 6 Months | Provided clarification on reporting post transplant data during first year for thoracic transplants. |
January 15, 2020
| Data Element | System | Form | Description |
| Other tobacco used | TIEDI® | Living donor registration | Added clarification on vaping and electronic cigarette usage. |
| Post-transplant malignancy | TIEDI | Thoracic transplant recipient follow-up (six months) | Added clarification on reporting post-transplant malignancy during first year for thoracic transplants. |
| Dialysis since last follow-up | TIEDI | Kidney, kidney-pancreas transplant recipient follow-up | Provided clarification for temporary dialysis. |
October 15, 2019
| Data Element | System | Form | Description |
| Components of ISHLT primary graft dysfunction (PGD) grade: Intubated at 72 hours, PaO2 at 72 hours, FiO2 at 72 hours, ECMO at 72 hours, Inhaled NO at 72 hours | TIEDI® | Lung TRR | Clarified that the starting point of calculating 72 hours. |
| Cigarette Use (>20 pack years) – Ever | WaitlistSM | Heart/Lung Candidate Lung Candidate | Added clarification on vaping and e-cigarette usage. |
| Number of hospitalizations for heart failure in the last 12 months | Waitlist | Adult Heart Status Justification Form | Clarified hospitalizations include both observation and inpatient stays. |
July 15, 2019
| Data Element | System | Form | Description |
| Cigarette Use (>20 pack years) – Ever | TIEDI® | DDR | Added clarification on vaping and e-cigarette usage. |
| Gender | TIEDI | TCR, TRR, TRF, Liver Recipient Explant Pathology Record | Updated definition to be consistent with Donor Gender. |
| Total Pancreas Preservation Time | TIEDI | Pancreas, Kidney/Pancreas TRR | Updated Total Pancreas Preservation Time to align with recent cold ischemia time updates made on the Kidney and Liver TRRs. |
| Total Organ Preservation Time From Cross Clamp to In Situ Reperfusion (include warm and cold time) – Heart, Heart-Lung; Left Lung; Right Lung (OR EN-BLOC) | TIEDI | Thoracic TRR | Updated definition to be consistent with Kidney, Kidney-pancreas, and Liver cold ischemia times. |
| CMV Total | TIEDI | LDR | Updated definition to clarify that the CMV total is a separate test and cannot be extrapolated from IgG and IgM. |
| EBV Total | TIEDI | LDR | Updated definition to clarify that the EBV total is a separate test and cannot be extrapolated from IgG and IgM. |
| Coronary Artery Disease | TIEDI | Thoracic 1- through Post 5-Year TRF | Replaced “new signs and symptoms” with a general diagnosis to capture CAD, also removed the “Note.” |
| Total Ischemic Time (Include cold, warm and anastomotic time) | TIEDI | Intestine TRR | Updated Total Ischemic Time for Intestine to align with recent cold ischemia time updates made on the Kidney, Pancreas, and Liver TRRs. |
| Did patient have any acute rejection episodes between transplant and discharge; Did patient have any acute rejection episodes during the follow-up period. | TIEDI | TRR, TRF (does not include 5-month Thoracic & Post 5-year for all organs) | Provided intent for reporting new episodes since last follow-up. |
| If Yes, Core Cooling Used | TIEDI | DDR | Provided clarification of Core Cooling. |
April 15, 2019
| Data Element | System | Form | Description |
| New diabetes onset between last follow-up to the current follow-up | TIEDI® | Intestine, Kidney, Liver, Thoracic TRF | Added guidance to address onset reported on previous follow-up forms. This excludes gestational diabetes. |
| Total Cold Ischemia Time | TIEDI® | Kidney, Kidney-Pancreas TRR | Total Cold Ischemia Time is the number of hours between donor kidney cross-clamp to recipient kidney reperfusion, with reperfusion being defined as when the first arterial clamp is removed and blood flow restored with warm recipient blood (i.e. first clamp removed in situ). |
| Graft Status | TIEDI® | Kidney TRR, TRF | Reason for dual or en bloc kidney graft failure. |
| Initial Flush Solution, Back Table Flush Solution, Final Flush/Storage Solution | TIEDI® | DDR | Equivalent solution should be selected when the specific name of a solution is not listed as an available choice. |
| HBV DNA | TIEDI® | Intestine, Kidney, Kidney-Pancreas, Liver, Pancreas, Thoracic, Thoracic – 6 Months TRF | PCR and NAT testing can be used to submit response for the HBV DNA test, similar to the HIV NAT and HCV NAT test. |
| Patient on insulin? | TIEDI® | Kidney-Pancreas, Pancreas TRF, TRR | Insulin dosage per day and duration of use is the number of days since the transplant occurred. |
| Ventricular tachycardia (VT) or ventricular fibrillation (VF) | WaitlistSM | Adult Heart Status 2 Justification Form | Anti-tachycardia pacing (ATP) can qualify as electrical cardioversion, in a hospital candidate on anti-arrhythmic medication. |
| Has the candidate experienced hemoglobinuria? | WaitlistSM | Thoracic Justification Form | Select Unknown if Urine Analysis was not done since submission of last justification form. |
| Furosemide, Torsemide, Bumetanide, Chlorothiazide, Metolazone, Other diuretic | WaitlistSM | Thoracic Justification Form | Enter the maximum limit if value is above the maximum allowed limit, and enter the minimum value if it is below the minimum allowed value. |
January 15, 2019
| Data Element | System | Form | Description |
| Gender | TIEDI® DonorNet® KPDSM | DDR and LDR DNR Add/Edit Donor | Intent is to collect biologic and physiologic traits (sex) at birth. |
| Total Cold Ischemic Time | TIEDI® | Liver TRR | Cold ischemic time starts when the organ is cross-clamped and ends when it is first perfused with warm recipient blood (i.e. first clamp removed in situ). Previous to this change, the hepatic artery and portal vein clamps both had to be removed before ischemic time ended. |
| Prior Cardiac Surgery (non-transplant) | TIEDI® | Heart, Lung and Heart-Lung TCR | VAD should be included in the report of previous cardiac surgeries. |
| Time of implant/initiation | WaitlistSM | Adult Heart Status Justification Form | New data collection element released, initial definition established with implementation of heart allocation policy on 10/18/2018. |
| Patient Using Either Oral Medication or Diet for Blood Sugar Control | TIEDI® | Pancreas and Kidney-Pancreas TRR and TRF | Any anti-hyperglycemic medications should be listed in this field, including oral and non-insulin injectables. |
Background
The OPTN’s secure transplant information database contains all national data on the candidate waiting list, organ donation and matching and transplantation. Organ transplant institutions use the system to match waiting candidates with donated organs. Institutions also rely on the database to manage time-sensitive, life-critical data, before and after their patients’ transplants.