Liver Familial Amyloid Polyneuropathy (FAP) Initial MELD/PELD Score Exception Form

OMB No. 0915-0157; Expiration Date: XX/XX/20XX

Liver Familial Amyloid Polyneuropathy (FAP) MELD/PELD Initial Exception Score Form

Diagnosis

The following fields, from the candidate's Waitlist record, are read-only. If the information is incorrect, it may be updated on the candidate's Waitlist record.

Transplant Center: Verify the transplant center code is correct.

Name: Verify the candidate's name is correct.

Date of birth: Verify the candidate's date of birth is correct.

Waitlist ID: Verify the candidate's Waitlist ID number is correct.

SSN: Verify the candidate's social security number is correct.

ABO: Verify the candidate's blood type is correct.

Diagnosis: Select the candidate's diagnosis from the drop-down list.

Cholangiocarcinoma (CCA)

Cystic fibrosis (CF)

Familial amyloid polyneuropathy (FAP)

Hepatic artery thrombosis (HAT)

Hepatocellular carcinoma (HCC)

Hepatopulmonary syndrome (HPS)

Metabolic disease

Portopulmonary hypertension

Primary hyperoxaluria

Other specify

Candidate MELD/PELD data: The fields, from the candidate's Waitlist record in the MELD/PELD Data Collection section, are read-only. Click view details to expand. Click hide details to collapse.

Details

Familial amyloid polyneuropathy (FAP): If familial amyloid polyneuropathy is selected for a candidate, complete the following questions:

Is the candidate actively registered on the waiting list for a heart transplant?: Whether or not the candidate is actively registered on the waiting list for a heart transplant is automatically determined by the system.

What is the candidate's ejection fraction (EF) as measured by echocardiogram?: Enter the percent and date of the echo. Ejection fraction value must be between 1 and 99 percent.

Can the candidate walk without assistance?: If the candidate can walk without assistance, select Yes. If not, select No. This is a required field.

Has a transthyretin (TTR) gene mutation been confirmed?: If a transthyretin (TTR) gene mutation has been confirmed, select Yes. If not, select No. This is a required field.

Does the candidate have a biopsy-proven amyloid?: If the candidate has a biopsy-proven amyloid, select Yes. If not, select No. This is a required field.

Results

Review results: The candidate's result details display.

Score

Policy score for candidates meeting standard criteria: The policy score for candidates meeting standard criteria displays.

Please request an exception score: Select an exception score for the candidate:

Equal to the policy assigned score for candidates meeting standard criteria

Score adjusted from the median MELD at transplant (MMaT)

        Less than MMaT (the number must fall between 1 and 20)

        Equal to MMaT

        More than MMaT (the number must fall between 1 and 20)

MELD 40

PELD 40 or higher (for pediatric candidates; the number must fall between 40 and 99)

Justification narrative: Enter text justifying the requested higher MELD or PELD score. 8000 character limit. 

 Confirm

Transplant physician name: Enter the transplant physician's name. This is a required field.

Transplant physician NPI: Enter the transplant physician's NPI number. The NPI must be 10 digits. This is a required field.

Email decision to: Enter at least one and up to three email addresses to receive notification of the outcome of the vote. Including up to three email addresses may be important to account for time off or out-of-office. This is a required field.

Public Burden Statement: The private, non-profit Organ Procurement and Transplantation Network (OPTN) collects this information in order to perform the following OPTN functions: to assess whether applicants meet OPTN Bylaw requirements for membership in the OPTN; and to monitor compliance of member organizations with OPTN Obligations. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. The OMB control number for this information collection is 0915-0157 and it is valid until XX/XX/202X. This information collection is required to obtain or retain a benefit per 42 CFR §121.11(b)(2). All data collected will be subject to Privacy Act protection (Privacy Act System of Records #09-15-0055). Data collected by the private non-profit OPTN also are well protected by a number of the Contractor’s security features. The Contractor’s security system meets or exceeds the requirements as prescribed by OMB Circular A-130, Appendix III, Security of Federal Automated Information Systems, and the Departments Automated Information Systems Security Program Handbook. The public reporting burden for this collection of information is estimated to average 0.27 hours per response, including the time for reviewing instructions, searching existing data sources, and completing and reviewing the collection of information. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to HRSA Information Collection Clearance Officer, 5600 Fishers Lane, Room 14N39, Rockville, Maryland, 20857 or paperwork@hrsa.gov.   

OPTN Restricted

File Type	application/vnd.openxmlformats-officedocument.wordprocessingml.document
File Title	Liver Familial Amyloid Polyneuropathy FAP MELD PELD Initial Exception Score Form Instructions
Author	Tara Taylor
File Modified	0000-00-00
File Created	2025-07-03