At a glance Current policy This proposal includes two distinct pieces intended to improve the liver allocation system: National Liver Review Board When a liver transplant program believes that a candidate’s calculated model for end-stage liver disease (MELD) or pediatric end-stage liver disease (PELD) score does not accurately reflect their medical urgency for transplant, they can submit a request for a MELD or PELD exception score. The National Liver Review Board (NLRB) reviews requests from transplant programs these exception scores. The NLRB uses policy and guidance documents to decide whether to approve or deny exception score requests. Alcohol-Associated Diagnoses The transplant candidate registration form (TCR) is the form completed and submitted by the transplant program when a candidate is added to the waiting list. The transplant recipient registration form (TRR) is the form completed and submitted by the transplant center after a recipient is transplanted. Alcohol-associated liver diseases (ALD) is the leading indication for liver transplantation, however, the current diagnoses on the TCR and TRR are outdated leading to inconsistent data entry. Supporting media Presentation View presentation Proposed changes Two changes to NLRB guidance for patients with hepatocellular carcinoma (HCC) Provides a way for candidates treated with immunotherapy to get an exception score. Clarifies the language for candidates whose HCC was previously resected but has since recurred so that they do not need to wait six months to receive a full exception score. Updates guidance for patients with hepatic encephalopathy with clearer language and more recent references. Clarifies that OPTN policy only requires a chest CT for candidates with HCC prior to the initial exception. Updates the list of ALD diagnoses on the TCR and TRR to allow for more accurate data entry. Anticipated impact What it's expected to do Provide NLRB reviewers and transplant programs updated guidance to use when reviewing and submitting exception score requests Collect accurate information on liver patients with ALD so there is more complete data collection What it won't do Will not impact how patients are prioritized on a match run Themes National Liver Review Board (NLRB) Data collection Terms to know Alcohol-associated liver diseases (ALD): A spectrum of liver diseases resulting from alcohol use. Candidate: An individual on the organ transplant waiting list. Transplant program: An organ specific facility within a transplant hospital. Guidance Documents: Documents that provide more information to transplant programs and NLRB members to use when making decisions on exception requests. Hepatocellular Carcinoma (HCC): The most common type of primary liver cancer, occurring most often in people with chronic liver diseases such as cirrhosis caused by hepatitis B or C infection. Hepatic Encepholopathy: Brain disfunction often caused by liver disease Model for End-Stage Liver Disease (MELD): The scoring system used in allocation of livers to patients who are at least 12 years old. Pediatric End-Stage Liver Disease (PELD): The scoring system used in allocation of livers to patients who are under 12 years old. National Liver Review Board (NLRB): A review board of members drawn from a nationwide pool of liver transplant physicians and surgeons, who review exception requests from transplant programs for candidates whose automatically calculated model for end-stage liver disease (MELD) score or pediatric end-stage liver disease (PELD) score does not accurately reflect the candidate's medical urgency for transplant. Transplant candidate registration form (TCR): The form completed and submitted by the transplant program when a candidate is added to the waiting list. The form contains information on patient demographics, previous transplants, payment, clinical information at time of listing and organ specific medical factors. Transplant recipient registration form (TRR):The form completed and submitted by the transplant program when a candidate is transplanted. The form contains patient status, pre-transplant clinical measures, transplant procedure, post-transplant clinical measures, graft status, treatment and immunosuppression. Click here to search the OPTN glossary Provide feedback Comments Region 1 | 09/24/2021 Region 1 sentiment: 2 Strongly Support, 4 Support, 2 Neutral/Abstain, 0 Oppose, 0 Strongly Oppose. Comments: A member commented in support of this proposal, saying it will bring important clarity to this subject. Region 6 | 09/23/2021 Region 6 sentiment: 5 Strongly Support; 13 Support; 5 Neutral/Abstain; 0 Oppose; 0 Strongly Oppose. No comments. Region 8 | 09/22/2021 Region 8 sentiment: 2 strongly support, 15 support, 6 neutral/abstain, 0 oppose, 0 strongly oppose. Comments: Region 8 supports this proposal. Region 7 | 09/15/2021 Region 7 sentiment: 5 strongly support, 6 support, 6 neutral/abstain, 0 oppose, 0 strongly oppose. Comments: One attendee commented that continuing to update the guidance document ensures that the guidance is representative of current best practice. The commenter further suggested to conduct a webinar and to additionally send out communication to liver programs and the NLRB reviewers, so they are aware of the changes. Another representative commented that the alcohol diagnosis change is also a great idea. Adding that the data on alcohol associate liver disease outcomes can be captured in more detail. Region 3 | 09/15/2021 Region 3 sentiment: 0 strongly support, 9 support, 6 neutral/abstain, 0 oppose, 0 strongly oppose. No comments. Region 9 | 09/14/2021 Region 9 sentiment: 2 Strongly Support; 5 Support; 2 Neutral/Abstain; 0 Oppose; 0 Strongly Oppose. No comments . Region 2 | 09/10/2021 • Region 2 sentiment: 9 Strongly Support, 11 Support, 6 Neutral/Abstain, 0 Oppose, 0 Strongly Oppose • Comments: This was not discussed during the meeting but OPTN representatives were able to submit comments with their sentiment. The proposal was supported by the region and one member commented that there needs to be a universal definition. Region 5 | 08/30/2021 Region 5 sentiment: 7 strongly support, 16 support, 4 neutral/abstain, 0 oppose, 0 strongly oppose. Region 5 supported the Review of NLRB Diagnoses and Update to Alcohol-Associated Diagnoses proposal. One member requested a consideration for “cirrhosis due to alcohol without acute alcohol-associated hepatitis." Another member stated that this is a significant opportunity to address and standardize listing. Region 4 | 08/27/2021 3 strongly support, 6 support, 1 neutral/abstain, 0 oppose, 0 strongly oppose. Region 4 supported this proposal.