Data definition quarterly updates

Data definition quarterly updates

Audience

All UNetSM users who complete OPTN data collection forms

At-a-glance

A cross-functional team of UNOS staff and OPTN members continues to work on a data governance initiative to improve the consistency and quality of OPTN data collection. The quarterly set of field definitions is published in UNet online help as of October 15, 2019.

Quarterly updates

October 15, 2019
Data ElementSystemFormDescription
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 hoursTIEDI®Lung TRRClarified that the starting point of calculating 72 hours.
Cigarette Use (>20 pack years) – EverWaitlistSMHeart/Lung Candidate
Lung Candidate
Added clarification on vaping and e-cigarette usage.
Number of hospitalizations for heart failure in the last 12 monthsWaitlistAdult Heart Status Justification FormClarified hospitalizations include both observation and inpatient stays.
July 15, 2019
Data ElementSystemFormDescription
Cigarette Use (>20 pack years) – EverTIEDI®DDRAdded clarification on vaping and e-cigarette usage.
GenderTIEDITCR, TRR, TRF, Liver Recipient Explant Pathology RecordUpdated definition to be consistent with Donor Gender.
Total Pancreas Preservation TimeTIEDIPancreas, Kidney/Pancreas TRRUpdated 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)TIEDIThoracic TRRUpdated definition to be consistent with Kidney, Kidney-pancreas, and Liver cold ischemia times.
CMV TotalTIEDILDRUpdated definition to clarify that the CMV total is a separate test and cannot be extrapolated from IgG and IgM.
EBV TotalTIEDILDRUpdated definition to clarify that the EBV total is a separate test and cannot be extrapolated from IgG and IgM.
Coronary Artery DiseaseTIEDIThoracic 1- through Post 5-Year TRFReplaced “new signs and symptoms” with a general diagnosis to capture CAD, also removed the “Note.”
Total Ischemic Time (Include cold, warm and anastomotic time)TIEDIIntestine TRRUpdated 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.TIEDITRR, 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 UsedTIEDIDDRProvided clarification of Core Cooling.
April 15, 2019
Data ElementSystemFormDescription
New diabetes onset between last follow-up to the current follow-upTIEDI®Intestine, Kidney, Liver, Thoracic TRFAdded guidance to address onset reported on previous follow-up forms. This excludes gestational diabetes.
Total Cold Ischemia TimeTIEDI®Kidney, Kidney-Pancreas TRRTotal 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 StatusTIEDI®Kidney TRR, TRFReason for dual or en bloc kidney graft failure.
Initial Flush Solution, Back Table Flush Solution, Final Flush/Storage SolutionTIEDI®DDREquivalent solution should be selected when the specific name of a solution is not listed as an available choice.
HBV DNATIEDI®

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, TRRInsulin dosage per day and duration of use is the number of days since the transplant occurred.
Ventricular tachycardia (VT) or ventricular fibrillation (VF)WaitlistSMAdult Heart Status 2 Justification FormAnti-tachycardia pacing (ATP) can qualify as electrical cardioversion, in a hospital candidate on anti-arrhythmic medication.
Has the candidate experienced hemoglobinuria?WaitlistSMThoracic Justification FormSelect Unknown if Urine Analysis was not done since submission of last justification form.

Furosemide, Torsemide, Bumetanide, Chlorothiazide, Metolazone, Other diuretic

WaitlistSMThoracic Justification FormEnter 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 ElementSystemFormDescription
GenderTIEDI®
DonorNet®
KPDSM
DDR and LDR
DNR
Add/Edit Donor
Intent is to collect biologic and physiologic traits (sex) at birth.
Total Cold Ischemic TimeTIEDI®Liver TRRCold 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 TCRVAD should be included in the report of previous cardiac surgeries.
Time of implant/initiationWaitlistSMAdult Heart Status Justification FormNew 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 ControlTIEDI®Pancreas and Kidney-Pancreas TRR and TRFAny anti-hyperglycemic medications should be listed in this field, including oral and non-insulin injectables.

More details

We provide a list of revised definitions each quarter, 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; you 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 Data Advisory Committee.

Where to find the info in Help Documentation

Access Secure Enterprise and then choose TIEDI. 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.

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.

Contact

If you have questions, please contact UNOS Customer Service at (800) 978-4334 or unethelpdesk@unos.org.

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