Matching organs. Saving lives.

News

Data definition process in place to bring clarity and consistency to transplant forms

Audience

All UNetSM users who complete OPTN data collection forms

Implementation

January 15, 2019; quarterly updates

At-a-glance

A cross-functional team of UNOS staff and OPTN members is working on a data governance initiative to improve the consistency and quality of OPTN data collection. The first set of data definitions using a new format are published in UNet online Help as of January 15, 2019.

We will provide a list of revised definitions each quarter, to answer member questions about existing data fields and to clarify new requirements.

More details

This effort aims to provide clear, concise data 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 data definitions includes reviews by multidisciplinary UNOS staff and the Data Advisory Committee.

Summary of definition changes

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.

Where to find the info in Help Documentation

Access Secure Enterprise and then choose TIEDI. On the menu, choose Help and click Online Help. Details can be found under Manage Data – Data Definitions and History of Definition Changes. Record Field Descriptions have also been updated to include each data element.

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.

National Liver Review Board to be implemented Jan. 31, 2019

Audience:
Liver transplant program directors, surgeons, physicians, administrators, clinical coordinators and data coordinators

Implementation date:
January 31, 2019

At-a-glance
The National Liver Review Board (NLRB) will begin operation on this date. The original NLRB proposal is addressed in this policy notice; some refinements were addressed in the liver distribution policy approved in December 2018, as noted in this briefing paper.

The system will collect additional data for certain standard exceptions, allowing more exceptions to be automatically approved. Requests for custom exceptions will be considered in relation to the median score at transplant (median MELD at transplant (MMaT) for recent MELD recipients listed at centers within a 250 nautical mile radius of your transplant program; national median PELD at transplant (MPaT) for all recent PELD recipients). UNOS will calculate and publish MMaT and MPaT scores approximately January 17 and update them approximately every 180 days thereafter.

NLRB members will use guidance documents available here to assess the most common types of exceptions.

Candidate exception scores that are current as of the implementation date will remain the same until the current exception expires. All requests for new or extension exception scores after that date will follow the new criteria and scoring model.

Find more specific information below about what will be different beginning Jan. 31.

What you should know about the NLRB

The NLRB will be comprised of three specialty boards: Adult HCC, Adult Other Diagnosis, and Pediatrics.

Every active liver transplant program may appoint a representative and alternate to each of the adult specialty boards. A liver transplant program with an active pediatric component may appoint a representative and an alternate to the pediatric specialty board.  If you have not already submitted your representative(s), you may do so using this form.

Please be aware of the new guidance and educate your staff on the new scoring for standardized exception requests.  Please also communicate with your candidates who have existing exception scores.

If you are submitting information for a standardized exception, please submit the required information in discrete data fields in UNetSM instead of the narrative form used up until NLRB implementation.

Resources

  • Various resources are available in the implementation toolkit. They will be updated and new resources will continue to be added in coming weeks.
  • Access all the available policy and system trainings in UNOS Connect from the course catalog; Liver category
  • National Liver Review Board Policy: MELD/PELD Exception Scoring
  • National Liver Review Board Policy: New Processes
  • NLRB training for review board representatives

 Questions?
If you have questions about how to submit exception forms, contact UNOS Customer Service at 800-978-4334.  For policy-related questions, send an e-mail to member.questions@unos.org or call 844-395-4428.

 

 

 

 

Upcoming policy implementation reminder for labs and OPOs

By March 1, 2019, OPOs and the labs they work with will need to have a process in place to ensure that the raw HLA data for deceased donors is uploaded in DonorNet in the source documentation section. Members that upload HLA data directly into UNetSM will need to ensure that they have an internal process for verifying the accuracy of HLA data outlined in the written agreement between the lab and the center they serve. Read policy notice.

If your lab or OPO is having trouble uploading HLA worksheets, you can find useful help documentation within DonorNet. Titled “Attaching Files to a Donor’s Record”, it’s the third topic under the Donors heading. You can also visit UNOS Connect (accessible from UNet under the Resources tab) to find an instructional video. This 5 minute video titled Image Posting (course number SYS129) is available in the Systems category of the course catalog.

Also related to this policy implementation, each lab must be sure to have an updated written agreement with every OPO they serve. This is specified in Bylaw language C.2 D. OPO Affiliation.

Calling for National Donor Memorial Award for Excellence Nominations

UNOS invites OPOs and transplant centers to submit nominations for the tenth National Donor Memorial Award for Excellence, which recognizes an unsung hero (an individual or a couple). Nominees often are a donor parent, recipient, living donor or volunteer–anyone who has gone “above and beyond” to promote organ donation and transplantation, with little public recognition.

Each organization is limited to one entry. Submit your entry to Michelle Tolliver in UNOS’ Marketing and Public Relations department by Tuesday, March 19. You can renominate past candidates who were not selected as winners.

.UNOS will present the 2019 award at an evening reception during the June 10, meeting of the OPTN/UNOS Board of Directors in Richmond, VA.

The award winner and a guest, along with a representative from the nominating organization, will receive round-trip travel to Richmond and overnight accommodations. We’ll notify the OPO or transplant center that submits the winning nomination by the end of April. Every nominating OPO/transplant center will receive a Certificate of Nomination and a small gift for its nominee, recognizing his or her outstanding contributions to organ donation and transplantation.

For more information, call Michelle Tolliver at (804) 782-4865 or email her.

Organ transplants in United States set sixth consecutive record in 2018

The 36,527 organ transplants performed in the United States in 2018 set an annual record for the sixth straight year, according to preliminary data from United Network for Organ Sharing (UNOS), which serves as the national Organ Procurement and Transplantation Network (OPTN) under federal contract. In 2018, the total number of organ transplants exceeded 750,000 performed since 1988, the first full year national transplant data were collected.

The number of transplants, using organs from both deceased and living donors, increased five percent over 2017. Approximately 81 percent (29,680) of the transplants performed in 2018 involved organs from deceased donors. Living donor transplants accounted for the remaining 19 percent (6,849). The number of living donor transplants represented the highest total since 2005 and increased nearly 11 percent over 2017.

“We are incredibly proud and grateful to have facilitated a record number of lifesaving organ transplants in 2018,” said Sue Dunn, president of the OPTN/UNOS Board of Directors. “We never forget that our work is made possible by the selfless donors and their courageous families who make the powerful decision to give the gift of life. We will continue to work tirelessly to maximize that gift on behalf of the nearly 114,000 who await a transplant.”

In 2018, 10,721 people provided one or more organs for transplantation as deceased organ donors. This was a four percent increase over the 2017 total, and it continues an eight-year trend of record-setting donation.

While the number of potential deceased organ donors varies among different areas of the country due to differences in population size and medical characteristics, increases were noted in many areas. Of the 58 organ procurement organizations (OPOs) coordinating deceased organ donation nationwide, 41 (70 percent) experienced an increase in donors from 2017 to 2018, including at least one OPO in each of UNOS’ 11 regions.

“A key to continuing the success of the field is to support efficient decision-making and improve communications among OPOs and transplant centers,” said Brian Shepard, Chief Executive Officer of UNOS. “We are working on a number of innovation projects to increase the efficiency of these key processes.”

As in several previous years, some of the increase in deceased donation is due to increased usage of donors with a broader set of medical criteria than was considered in the past. Nearly 20 percent of donors in 2018 donated after circulatory death as opposed to brain death. Nine percent of deceased donor kidney transplants involved organs with a kidney donor profile index (KDPI) score of 86 or higher, which may function less time compared to low KDPI kidney offers but may also shorten the waiting time for transplant candidates. Other donor characteristics setting all-time records in 2018 included an age of 50 or older and/or being identified as having increased risk for blood-borne disease.

Submitting LAS exception requests for candidates diagnosed with PH

Audience

We are providing this information to all lung transplant physicians, lung transplant surgeons, lung transplant coordinators, UNetSM Site Administrators, transplant program directors, and data coordinators at lung and heart/lung transplant programs. Please share this notice with anyone in your organization who would benefit from this information. This information is also posted monthly on our member website, Transplant Pro.

 Reminder: LAS Revisions were implemented on February 19, 2015

Revisions to the Lung Allocation Score (LAS) were implemented on February 19, 2015. The revisions include policy changes and changes to UNetSM. Visit the toolkit on the OPTN website for resources to help with this transition.

 Submitting Lung Allocation Score Exception Requests for Candidates Diagnosed with Pulmonary Hypertension

 Guideline

Lung transplant candidates diagnosed with pulmonary hypertension (PH) and who meet the following criteria may qualify for an increase in their Lung Allocation Score (LAS):

  1. Patient is deteriorating on optimal therapy, and
  2. Patient has a right atrial pressure greater than 15 mm Hg or a cardiac index less than 1.8 L/min/m2.

To request an increase in a PH candidate’s LAS, transplant programs must submit an exception request to the Lung Review Board (LRB); this request should include sufficient clinical detail to support that the patient meets the above criteria.

If the transplant program believes that its patient has similar waiting list mortality and potential transplant benefit as a PH patient meeting the criteria listed above, then it should provide a detailed narrative on that assertion, referencing literature supporting the request for a higher LAS. When submitting an exception request, transplant programs must provide a clinical justification for the exception. Please refer to Policy 10.2.B (Lung Candidates with Exceptional Cases) for additional information about the exception review process.

Policy 10.2.B allows a transplant program to submit an exception request for an LAS, an estimated value for one of the tests that is used to calculate the LAS, or assignment to a diagnosis group for a disease that is not listed in WaitlistSM.

 Note:  The LRB will render clinical judgment on exception requests for higher LAS, diagnosis, or estimated value.

Transplant programs may wish to submit to the LRB an exception request for the candidate’s LAS to be at the national 90th percentile (see table below).

The LAS for all active candidates greater than or equal to 12 years of age waiting for lung transplants as of December 14, 2018 are as follows:

Aaron McKoy (804) 782-6575If you have questions, please contact the UNetSM Help Desk at 1-800-978-4334 or unethelpdesk@unos.org. You may also contact your review board staff member: