Pediatric Heart Candidate Listing Registration

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

Pediatric Heart Candidate Listing Registration

The fields on the Heart Candidate Registration Form contain demographic and basic clinical information about candidates on the national waiting list.

Add New Candidate Registration

Transplant Hospital: Confirm the name of the transplant hospital.

Organ: Select Heart.

Candidate Add

Center: Confirm the name of the transplant hospital.

Organ: Confirm organ selection.

Age group: Select the candidate’s age group.

SSN: Enter the candidate’s SSN number.

Note:  SSN cannot:

• Contain 00 in the 4th and 5th place (e.g. XXX-00-XXXX is invalid)

• Contain 0000 in the last 4 places (e.g. XXX-XX-0000 is invalid)

• Begin with 666

Confirm SSN: Confirm the candidate’s SSN number.

Provider Information

Transplant Center: Verify the transplant center name, and that the provider number is the 6-character Medicare identification number of the hospital where the transplant candidate is listed.

24 Hour Contact Phone Number: Verify the transplant center phone number.

Demographic Information

SSN: Enter the candidate’s SSN number.

Note:  SSN cannot:

• Contain 00 in the 4th and 5th place (e.g. XXX-00-XXXX is invalid)

• Contain 0000 in the last 4 places (e.g. XXX-XX-0000 is invalid)

• Begin with 666

Confirm SSN: Confirm the candidate’s SSN number.

Last Name: Enter the last name of the candidate. This is a required field.

First Name: Enter the first name of the candidate. This is a required field.

MI: Enter the candidate's middle initial.

DOB: Enter the candidate's date of birth. This is a required field.

Birth sex: Indicate if the patient is Male or Female. Report patient sex (male or female), based on biologic and physiologic traits at birth. This is a required field.

Center's Patient ID: Enter the candidate's patient identification number that is assigned by your center, if applicable.

State of Permanent Residence: Select the full name of the state where the candidate's home is located.

Permanent Zip Code: Enter the 5-digit U.S. postal zip code for the address where the candidate's home is located. Note: Make corrections to an incorrect permanent zip code on the Transplant Candidate Registration (TCR) form in TIEDI^®. This field cannot be updated from the active list.

Ethnicity: The Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity (Office of Management and Budget (OMB) Statistical Policy Directive No. 15) define the minimum standards for collecting and presenting data on race and ethnicity for all Federal reporting. The OPTN collection of ethnicity is aligned to this standard.

OMB defines ethnicity to be whether a person self-identifies as Hispanic origin or not. For this reason, ethnicity is broken out in two categories, (1) Hispanic or Latino or (2) Not Hispanic or Latino. Select one ethnicity category or select ‘Ethnicity Not Reported’ if the candidate did not self-identify. This field is required.

Hispanic or Latino – A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race.

Not Hispanic or Latino

Ethnicity Not Reported

Race: The Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity (Office of Management and Budget (OMB) Statistical Policy Directive No. 15) define the minimum standards for collecting and presenting data on race and ethnicity for all Federal reporting. The OPTN collection of race is aligned to this standard. OMB defines race as a person’s self-identification with one or more social groups. ​

An individual can select one or more race categories (1) White, (2) Black or African American, (3) Asian, (4) American Indian or Alaska Native, (5) Native Hawaiian or Other Pacific Islander. Select 'Race Not Reported' if the candidate’s race is not reported.​ This field is required.​

Note: A person may report multiple races. Persons reporting Hispanic or Latino ethnicity may report themselves as any race category or report no race at all.

Select one or more race sub-categories or origins. Select 'Other Origin' if origin is not listed. Select 'Origin Not Reported' if the origin was not self-identified by the person.​​

White – A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.​

European Descent​

Arab or Middle Eastern​

North African (non-Black)​

Other Origin​

Origin Not Reported​​

Black or African American – A person having origins in any of the Black racial groups of Africa. ​

African American ​

African (Continental)​

West Indian​

Haitian​

Other Origin​

Origin Not Reported ​​

American Indian or Alaska Native – A person having origins in any of the original peoples of North and South America (including Central America) and who maintains tribal affiliation or community attachment.​

American Indian​

Eskimo​

Aleutian​

Alaska Indian ​

Other Origin​

Origin Not Reported​

Asian – A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.​

Asian Indian/Indian Sub-Continent ​

Chinese​

Filipino​

Japanese​

Korean​

Vietnamese​

Other Origin​

Origin Not Reported ​

​Native Hawaiian or Other Pacific Islander – A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.​

Native Hawaiian​

Guamanian or Chamorro​

Samoan​

Other Origin​

Origin Not Reported​

Race Not Reported – Select if person did not self-identify a race category or origin.​

Clinical Information

ABO: Select the candidate's blood type. This is a required field.

Note: A2 is used as shorthand for any blood type A subtype other than A1 (i.e., non-A1, negative for A1). A2B is used as shorthand for any blood type AB subtype other than A1B (i.e., non-A1B, negative for A1B). Policy requires at least two (2) separate blood typings prior to listing. Policy also requires you to review all known available blood type source documents to verify the candidate's blood type. See OPTN Policies for additional information. Use the search feature to locate specific policy information on ABO Typing.

O
A
B
AB
Z (in Utero Only)

Accept an Intended Blood Group Incompatible Organ?: Indicate whether the candidate will accept an incompatible blood type by selecting Yes or No. This field is for pediatric candidates less than 2 years old at time of registration.

Note: For candidates with ABO type AB, you must select No.

Eligibility status to receive offers on A organs:  If the candidate has missing or expired anti-A titer data, the candidate is ineligible to receive an incompatible blood type offer.

Eligibility status to receive offers on B organs: If the candidate has missing or expired anti-B titer data, the candidate is ineligible to receive an incompatible blood type offer.

Eligibility status to receive offers on AB organs:  If the candidate has missing or expired anti-A and anti-B titer data, the candidate is ineligible to receive an incompatible blood type offer.

Note: In order for a candidate to receive an intended blood group incompatible heart, he or she must satisfy the following criteria: candidate must be less than 1 year old and be listed as a Status 1A or 1B, or must have been listed prior to turning 2 years old, must have the most recent anti-A and/or anti-B titer value(s) reported, which are less than or equal to 1:16 and must not have received any treatments within the prior 30 days that could have reduced the candidate titer(s) to 1:16 or less.

Most Recent Anti-A Titer: If the candidate has an ABO blood type of B, select the most recent anti-A titer value from the drop-down list, then enter the corresponding Sample Date. This is a required field.

Anti-A Titer Evaluation Due Date: If new anti-A titer data is not entered by the due date, the candidate will become ineligible to receive incompatible blood type offers.

Most Recent Anti-B Titer: If the candidate has an ABO blood type of A, select the most recent Anti-B titer value from the drop-down list, then enter the corresponding Sample Date. This is a required field.

Anti-B Titer Evaluation Due Date: If new anti-B titer data is not entered by the due date, the candidate will become ineligible to receive incompatible blood type offers.

Most Recent Anti-A and Anti-B titers: If the candidate has an ABO blood type of O select the most recent Anti-A and Anti-B titers from the drop-down list, then enter the corresponding Sample Dates. This is a required field.

Anti-A and Anti-B Titer Evaluation Due Dates: If new anti-A and anti-B titer data is not entered by the due date, the candidate will become ineligible to receive incompatible blood type offers.

Has candidate received any treatments that may have reduced the titer values to 1:16 or less within 30 days of when the blood sample was collected?  Indicate whether the candidate has or has not received treatments by selecting YES or NO. This is a required field.

Height: Enter the height of the candidate at the time of listing in the appropriate space, in feet and inches or centimeters. The height must fall between 0 and 7 feet or 1 and 241 centimeters. This is a required field.

Weight: Enter the weight of the candidate at the time of listing in the appropriate space, in pounds or kilograms. The weight must fall between 0 and 650 pounds or 0 and 295 kilograms. This is a required field.

HLA Class I

HLA: Histocompatibility antigens are currently not required when adding candidates for extra renal organs (LI, IN, HR, HL and LU) to the active list. If histocompatibility antigens are entered, at least one value is required for each antigen (A, B, Bw4, Bw6 and DR). The order in which the antigens are entered does not affect the matching and screening process.

A

A

B

B

BW4

BW6

C

C

HLA Class II

HLA: Histocompatibility antigens are currently not required when adding candidates for extra renal organs (LI, IN, HR, HL and LU) to the active list. If histocompatibility antigens are entered, at least one value is required for each antigen (A, B, Bw4, Bw6 and DR). The order in which the antigens are entered does not affect the matching and screening process.

DR

DR

DR51

DR51

DR52

DR52

DR53

DR53

DQB1

DQB1

DQA1

DQA1

DPB1

DPB1

DPA1

DPA1

Organ Information

Candidate Medical Urgency Status: Indicate the candidate's medical urgency status. If one of the Active statuses is selected, the candidate is eligible to appear on a UNet match run. If Temporarily inactive is selected, the candidate is non-eligible to appear on the UNet match run. This is a required field.

Note: See OPTN Policies for definitions of the Candidate Medical Urgency Status. Use the search feature to locate specific policy information on medical urgency.

Select one of the following for pediatric candidates:

Status 1A

Status 1B

Status 2

Temporarily Inactive

Select one of the following for adult candidates:

Adult Status 1

Adult Status 2  

Adult Status 3

Adult Status 4

Adult Status 5

Adult Status 6

Temporarily Inactive

Inactive reason: Select the reason the candidate is inactive.

Inactive Reason Code	Description
1	Candidate cannot be contacted
2	Candidate choice
3	Candidate work-up incomplete
4	Insurance issues
5	Medical non-compliance
6	Inappropriate substance use
7	Temporarily too sick
8	Temporarily too well
9	Weight currently inappropriate for transplant
10	Transplanted - removal pending UNET data correction
11	Inactivation due to VAD implantation and/or VAD complication
12	TX Pending
13	Physician/Surgeon unavailable
14	Candidate for living donor transplant only
15	Administrative: Waiting time/ped-adult adjustment
16	COVID-19 Precaution

 

Note: The inactive reason TX'ed - removal pending UNet^SM data correction is only to be used when a transplant center removed the incorrect candidate from Waitlist due to transplant and is waiting for UNOS to correct the data so that the correct candidate can be removed with the right donor ID. Candidates should not be set to inactive for this reason for more than 5 days.

Note: To reactivate an adult heart candidate that has been temporarily inactive, click Select Status button from the candidate view page. Select the candidate’s medical urgency status from the Candidate Medical Urgency Status dropdown and proceed to submit the justification form.

Heart Diagnosis Code: Indicate the candidate's heart diagnosis code. This is a required field.

Preliminary Crossmatch Required: Select Yes, if a preliminary cross-match is required. If it is not, select No.

Number of previous Heart Transplants: Indicate the number of candidate's previous heart transplants. This is a required field.

Is the candidate listed for a vascularized composite allograft (VCA)?:  Select Yes, if the candidate is listed for a VCA. If not, select No.

Justification Form Status 1A

To qualify for status 1A, the patient must either meet at least one of the criteria below (select all that apply) or an exception request must be submitted to the NHRB for review. For more information, review the NHRB guidance document.

By criteria: Is admitted to the transplant hospital that registered the candidate on the waiting list and:

Requires continuous mechanical ventilation

Requires assistance of an intra-aortic balloon pump

Has ductal dependent pulmonary or system circulation, with ductal patency maintain by stent or prostaglandin infusion

Has a hemodynamically significant congenital heart disease diagnosis, and requires infusion of multiple intravenous inotropes or a high dose of single intravenous inotrope

Congenital Heart Disease Diagnosis (Check all that apply)

Atrial Isomerism/Heterotaxy

Atrioventricular Septal Defect

Congenitally Corrected Transposition (L-TGA)

Double Outlet Right Ventricle

Ebstein's Anomaly

Hypoplastic Left Heart Syndrome

Other left Heart Valvar/Structural Hypoplasia

Pulmonary Atresia with Intact Ventricular Septum

Single Ventricle

Tetralogy of Fallot

Transposition of the Great Arteries

Truncus Arteriosus

Ventricular Septal Defect(s)

Other

IV Inotropic Support

Requires infusion of a single high-dose intravenous inotrope (i.e., dobutamine greater than or equal to 7.5 mcg/kg/min, milrinone greater than or equal to 0.50 mcg/kg/min, dopamine greater than or equal to 7.5 mcg/kg/min, or epinephrine greater than or equal to 0.02 mcg/kg/min) or multiple intravenous inotropes.

Enter a dosage value for at least one of the inotropes below:

Dobutamine: Enter the value in mcg/kg/min. The normal therapeutic range falls between 1 to 30.

Dopamine: Enter the value in mcg/kg/min. The normal therapeutic range falls between 1 to 30.

Milrinone: Enter the value in mcg/kg/min. The normal therapeutic range falls between 0.1 to 3.

Epinephrine: Enter the value in mcg/kg/min. The normal therapeutic range falls between 0.01 to 10.

Norepinephrine (Levophed): Ener the value in mcg/kg/min. The normal therapeutic range falls between 0.1 to 10. Note: Acceptable as a justification for this criterion only if administered with one or more of the inotropes listed above.

Vasoactive Support

The following medicines are not eligible for meeting the single high-dose criteria, but are necessary for evaluating patient suitability.

IV Nitroglycerin: Enter the value in mcg/kg/min. The normal therapeutic range falls between 1 to 30.

Nesiritide (Natrecor): Enter the value in mcg/kg/min. The normal therapeutic range falls between 0.0005 to 0.05.

Nitroprusside (Nipride, Nitropress): Enter the value in mcg/kg/min.  The normal therapeutic range falls between 0.05 to 10.

Phenylephrine (Neo-Synephrine): Enter the value in mcg/kg/min.  The normal therapeutic range falls between 0.1 to 10.

Vasopressin (Pitressin): Enter the value in units/min.  The normal therapeutic range falls between 0.1 to 10.

May or may not be admitted to the transplant hospital that registered the candidate on the waiting list and

Requires assistance of a mechanical circulatory support device

By exception

If the candidate is admitted to the transplant hospital that registered the candidate on the waiting list and the transplant physician believes, using acceptable medical criteria, that a heart candidate has an urgency and potential for benefit comparable to that of other candidates at the registered status.

Justification narrative: Enter a clinical narrative which supports the eligibility of the candidate for an exceptional case. Maximum of 5000 characters.

Transplant physician name: Enter the name of the candidate's surgeon/physician. This is a required field.

Transplant physician NPI: Enter the NPI of the candidate's surgeon/physician. 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.

Justification Form Status 1B

 To qualify for status 1B, the patient must either meet at least one of the criteria below (select all that apply) or an exception request must be submitted to the NHRB for review. For more information, review the NHRB guidance document.

Patient must meet one of the following criteria:

1. Requires infusion of one or more inotropic agents but does not qualify for pediatric status 1A

2. Is less than one year old at the time of the candidate’s initial registration and has a diagnosis of hypertrophic or restrictive cardiomyopathy

• Hypertrophic cardiomyopathy

• Restrictive cardiomyopathy

By exception:

For those candidates that do not meet the criteria above and for whom the transplant physician believes, using acceptable medical criteria, that the candidate has an urgency and potential for benefit comparable to that of the other status 1B candidates, an exception may be requested and the narrative below will be reviewed by the National Heart Review Board.

Justification Narrative

Enter a clinical narrative which supports the eligibility of the candidate for an exceptional case. Maximum of 5000 characters.

Transplant physician name: Enter the name of the candidate's surgeon/physician. This is a required field.

Transplant physician NPI: Enter the NPI of the candidate's surgeon/physician. 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.

Additional Organs

Check any additional organs that the candidate may need. Checking organ(s) within this section will not register the candidate on the checked organ waiting list. You will need to complete a registration and verify the accuracy of donor acceptance criteria for each additional organ checked.

Kidney

Pancreas

Pancreas Islet

Intestine

Liver

Heart/Lung

Lung

Donor Characteristics

The following fields are evaluated when running a match to determine if this candidate will appear in the match list. If the donor does not meet the acceptance criteria for this candidate, the candidate will be screened off (not appear on) the match results.

Donor Characteristics

Minimum acceptable donor age: Enter the minimum donor age that the candidate can accept. The age must fall between 0 and 99 years. This field is required.

Maximum acceptable donor age: Enter the maximum donor age that the candidate can accept. The age must fall between 0 and 99 years. The maximum value must only be entered in months if the minimum value is also entered in months (e.g. you are able enter that you will accept donors from 3 months to 3 years in age, but you may NOT enter that you would accept a donor from 1 year to 36 months in age). This field is required.

Minimum acceptable donor height: Enter the minimum donor height that the candidate can accept in inches (in) or centimeters (cm). The height must fall between 0 to 305 inches, or 0 to 305 centimeters. The minimum acceptable donor height must be equal to or no more than 12 in. less than the candidate's listing height. This field is required.

Maximum acceptable donor height: Enter the maximum donor height that the candidate can accept in inches (in) or centimeters (cm). The height must fall between 0 to 305 inches, or 0 to 305 centimeters. The maximum acceptable donor height must be equal to or no more than 12 in. greater than the candidate's listing height. This field is required.

Minimum acceptable donor weight: Enter the minimum donor weight that the candidate can accept. The weight must be a whole number that falls between 0 and 440 pounds (lbs), or 0 and 200 kilograms (kg). The minimum acceptable donor weight should be no more than 30 percent (30%) below the candidate's listing weight. To eliminate the possibility of conversion or rounding issues, the match system adds .5 kg when comparing this value to the donor weight. This field is required.

Maximum acceptable donor weight: Enter the maximum donor weight that the candidate can accept. The weight must be a whole number that falls between 0 and 440 pounds (lbs), or 0 and 200 kilograms (kg). The maximum acceptable donor weight must be more than the candidate's listing weight, and must be greater than the minimum acceptable donor weight. To eliminate the possibility of conversion or rounding issues, the match system adds .5 kg when comparing this value to the donor weight. This field is required.

Donor birth sex requirements: Select whether the matching donor must be male, female, or either birth sex (male or female).

Accept DCD donor: If the candidate will accept a DCD (Donation after Circulatory Death) donor, select Yes. If not, select No. Donation after Circulatory Death (DCD) describes the organ recovery process that may occur following death by irreversible cessation of circulatory and respiratory functions. A DCD donor may also be called a non-heartbeating, asystolic, or donation after cardiac death donor. This field is required.

Medical and Social History

Accept a donor with a history of coronary artery disease?: If the candidate will accept a donor with a history of coronary artery disease, select Yes . If not, select No.

Infectious Diseases

Accept a Hepatitis B Core antibody positive donor? Select Yes if the candidate will accept a Hepatitis B core antibody positive donor. If not, select No. This field is required.

Accept an HBV NAT positive donor? Select Yes if the candidate will accept an HBV NAT positive donor. If not, select No This field is required.

Accept an HCV antibody positive donor? Select Yes if the candidate will accept an HCV antibody positive donor. If not, select No. This field is required.

Accept an HCV NAT positive donor? Select Yes if the candidate will accept an HCV NAT positive donor. If not, select No. This field is required.

Recovery

Maximum miles the organ or recovery team will travel: Enter the maximum miles the organ recovery team will travel. The number must fall between 0 and 9,999 miles. This field is required.

The matching system calculates mileage between the donor hospital and the recipient center based on the hospitals' zip codes. This distance is measured in nautical miles (a measure of flight distance), not in statute miles (a measurement of driving distance).

Conversion Table for Nautical and Statute Miles

Nautical Miles	Statute Miles
250	287.7
500	575.4
1000	1150.8
1500	1726.2
2000	2301.6
2500	2876.9

 

Unacceptable Antigens

Select all of the unacceptable antigens and then click the "Calculate" button for the CPRA score.

CPRA: Calculated Panel Reactive Antibody (CPRA) is the percentage of deceased donors expected to have one or more of the unacceptable antigens indicated on the waiting list for the candidate. The CPRA is derived from HLA antigen, allele, and epitope genotype frequencies for the different populations in proportion to their representation in the national deceased donor population.

Percent CPRA: The value rounded to the nearest one-hundredth and displayed with a % symbol. 

Detailed CPRA: The value displayed as a decimal to 6 digits of precision.

Select all A unacceptable antigens: Select the candidate's A unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all B unacceptable antigens: Select the candidate's B unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select BW unacceptable antigen: Select the candidate's BW unacceptable antigen, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all C unacceptable antigens: Select the candidate's C unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DR unacceptable antigens: Select the candidate's DR unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DR 51/52/53 unacceptable antigens: Select the candidate's DR 51, 52 and 53 unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DQB1 unacceptable antigens: Select the candidate's DQB1 unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DQA1 unacceptable antigens: Select the candidate's DQA1 unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DPB1 unacceptable antigens: Select the candidate's DPB1 unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DPB1 unacceptable epitopes: Select the candidate's DPB1 unacceptable epitopes, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Select all DPA1 unacceptable antigens: Select the candidate's DPA1 unacceptable antigens, if applicable. Make your selections from the left-hand column and click the arrow to add or remove them to the right-hand column.

Verify ABO

ABO: Verify the candidate’s ABO.

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 [email protected].   

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