03222023 Pancreas Transplant Candidate Registration_Instructions_CLEAN

Pancreas and Pancreas Islets Transplant Candidate Registration (TCR) Field Descriptions

The Transplant Candidate Registration (TCR) record is generated when a candidate for transplant is added to the OPTN/UNOS waiting list.

If the candidate is already on the waiting list for a transplant, another TCR record will not be generated unless listed by a different center or for another organ type.

The TCR record must be completed within 90 days from the record generation date. See OPTN Policies for additional information. Use the search feature to locate specific policy information on Data Submission Requirements.

To correct information that is already displayed on an electronic record, call the UNet^SM Help Desk at 1-800-978-4334.

Provider Information

Recipient Center: The Recipient Center information reported in Waitlist displays. Verify that the center information is the hospital where the transplant operation will be performed. The Provider Number is the 6-character Medicare identification number of the hospital. This is followed by the Center Code and Center Name.

Candidate Information

Organ Registered: Verify the organ(s) displayed is/are the organ(s) listed for this candidate. If the candidate is listed for more than one type of transplant, both organs should be displayed. Separate records exist for certain multi-organ transplant candidates (e.g. Heart/Lung and Kidney/Pancreas).

Date of Listing or Add: The date the candidate was listed or added in Waitlist will display.

Name: The waitlisted candidate's last name, first name and middle initial will be displayed. If it is incorrect, corrections must be completed on the active waitlist. For a candidate who has been removed from the waitlist, the Last Name, First Name and MI fields will display. Corrections may be made directly in the record. These fields are required.

Previous Surname: If the candidate had a previous surname that is different from the name entered, enter the previous surname.

SSN: Verify the candidate's social security number. If the information is incorrect and the candidate is waitlisted, contact the UNOS Organ Center at 1-800-292-9537.

Gender: Report candidate sex (Male or Female), based on biologic and physiologic traits at birth. If sex at birth is unknown, report sex at time of registration as reported by candidate or documented in medical record. The intent of this data collection field is to capture physiologic characteristics that may have an impact on recipient size matching or graft outcome. This field is required.

HIC: Enter the 9 to 11 character Health Insurance Claim number for the candidate. If the candidate does not have a HIC number, you may leave this field blank.

DOB: Verify the displayed date is the candidate's date of birth. If the information is incorrect, correction must be completed on the active waitlist. If the candidate has been removed, reenter the correct date using the 8-digit numeric format of MM/DD/YYYY. Corrections may be made directly in the record. This field is required.

State of Permanent Residence: Select the name of the state of the candidate's permanent address at the time of listing (location of full-time residence, not where the candidate is currently waiting). This field is required. (List of State codes)

Permanent Zip Code: Enter the candidate's permanent zip code (location of full-time residence, not where the candidate is currently waiting). This field is required.

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 or not a person self-identifies as Hispanic or Latino. For this reason, ethnicity is broken out into two categories, (1) Hispanic or Latino or (2) Not Hispanic or Latino. Select one ethnicity category or select 'Ethnicity Not Reported' if a category was not self-identified by the person. 

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 – Select if person did not self-identify an ethnicity category.

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, or Race Not Reported.

This field is required.

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.

Citizenship: Select as appropriate to indicate the candidate's citizenship. This field is required. (List of Citizenship codes)

U.S. Citizen: A United States citizen by birth or naturalization.

Non-U.S. Citizen/U.S. Resident: A non-citizen of the United States for whom the United States is the primary place of residence.

Non-U.S. Citizen/Non-U.S. Resident, Traveled to U.S. for Reason Other Than Transplant: A non-citizen of the United States for whom the United States is not the primary place of residence, and who came to the U.S. for a reason other than transplant.

Non-U.S. Citizen/Non-U.S. Resident, Traveled to U.S. for Transplant: A non-citizen of the United States for whom the United States is not the primary place of residence, and who came to the U.S. for the purpose of transplant.

Country of Permanent Residence: If Non-U.S. Citizen/Non-U.S. Resident, Traveled to U.S. for Reason Other Than Transplant or Non-U.S. Citizen/Non-U.S. Resident, Traveled to U.S. for Transplant is selected, enter the country associated with the primary place of residence. This field is required.

Year of Entry to the U.S.: If the candidate is a Non-U.S. Citizen/Non-U.S. Resident, enter the year the candidate entered the United States. Select the appropriate status from the ST field (Missing, Unknown, N/A, Not Done).This field is required.

Highest Education Level: Select the choice which best describes the candidate's highest level of education. This field is required. (List of Education codes)

None
Grade School (0-8)
High School (9-12) or GED
Attended College/Technical School
Associate/Bachelor Degree
Post-College Graduate Degree
N/A (< 5 Yrs Old)
Unknown

Functional Status: Select the choice that best describes the candidate's functional status at the time of listing. This field is required.

Note: The Karnofsky Index will display for adults aged 18 and older.

100% - Normal, no complaints, no evidence of disease
90% - Able to carry on normal activity: minor symptoms of disease
80% - Normal activity with effort: some symptoms of disease
70% - Cares for self: unable to carry on normal activity or active work
60% - Requires occasional assistance but is able to care for needs
50% - Requires considerable assistance and frequent medical care
40% - Disabled: requires special care and assistance
30% - Severely disabled: hospitalization is indicated, death not imminent
20% - Very sick, hospitalization necessary: active treatment necessary
10% - Moribund, fatal processes progressing rapidly
Unknown

Note: The Lansky Score will display for pediatrics aged less than 18.

100% - Fully active, normal
90% - Minor restrictions in physically strenuous activity
80% - Active, but tires more quickly
70% - Both greater restriction of and less time spent in play activity
60% - Up and around, but minimal active play; keeps busy with quieter activities
50% - Can dress but lies around much of day; no active play; can take part in quiet play/activities
40% - Mostly in bed; participates in quiet activities
30% - In bed; needs assistance even for quiet play
20% - Often sleeping; play entirely limited to very passive activities
10% - No play; does not get out of bed
Not Applicable (patient < 1 year old)
Unknown

Note: This evaluation should be in comparison to the person's normal function, indicating how the patient's disease has affected their normal function.

Cognitive Development: (Complete for candidates 18 years of age or younger.) Select the choice that best describes the candidate's cognitive development at the time of listing. This field is required. (List of Cognitive Development codes)

Definite Cognitive Delay/Impairment (verified by IQ score <70 or unambiguous behavioral observation)

Probable Cognitive Delay/Impairment (not verified or unambiguous but more likely than not, based on behavioral observation or other evidence)

Questionable Cognitive Delay/Impairment (not judged to be more likely than not, but with some indication of cognitive delay/impairment such as expressive/receptive language and/or learning difficulties)

No Cognitive Delay/Impairment (no obvious indicators of cognitive delay/impairment)

Not Assessed

Motor Development: (Complete for candidates 18 years of age or younger.) Select the choice that best describes the candidate's motor development at the time of listing. This field is required. (List of Motor Development codes)

Definite Motor Delay/Impairment (verified by physical exam or unambiguous behavioral observation)

Probable Motor Delay/Impairment (not verified or unambiguous but more likely than not, based on behavioral observation or other evidence)

Questionable Motor Delay/Impairment (not judged to be more likely than not, but with some indication of motor delay/impairment)

No Motor Delay/Impairment (no obvious indicators of motor delay/impairment)

Not Assessed

Working for income: (Complete for candidates 18 years of age or older.) If the candidate is physically working and receiving a salary for income, select Yes. If not, select No. If unknown, select UNK.

Academic Progress: (This field is required for candidates less than 18 years of age.) Select the choice that best describes the candidate's academic progress at the time of listing. If the candidate is too young for school or has graduated from high school, select Not Applicable, too young for school/High School graduate or GED. (List of Academic Progress codes)

Within One Grade Level of Peers
Delayed Grade Level
Special Education
Not Applicable, too young for school/High School graduate or GED
Status Unknown

Academic Activity Level: (This field is required for candidates less than 18 years of age.) Select the choice that best describes the candidate's academic activity level at the time of listing. If the candidate is too young for school or has graduated from high school, select Not Applicable, too young for school/High School graduate or GED. (List of Academic Activity Level codes)

Full academic load
Reduced academic load
Unable to participate in academics due to disease or condition
Not Applicable, too young for school/High School graduate or GED
Status Unknown

Previous Transplants: The three most recent transplant(s), indicated on the candidate's validated Transplant Recipient Registration (TRR) record(s), will display. Verify all previous transplants listed by organ type, transplant date and graft failure date.

Note: The three most recent transplants on record for this candidate will be displayed for verification. If there are any prior transplants that are not listed here, contact the UNet Help Desk at 1-800-978-4334 or [email protected] to determine if the transplant event is in the database.

Previous Pancreas Islet Infusion: If the candidate received a previous pancreas islet infusion, select Yes. If not, select No. If unknown, select UNK. This field is required for adults.

Source of Payment:

Primary: Select as appropriate to indicate the candidate's source of primary payment (largest contributor) for the transplant. If the source of payment is not yet determined, select Pending. This field is required. (List of Primary Insurance codes)

Private insurance refers to funds from agencies such as Blue Cross/Blue Shield, etc. It also refers to any worker's compensation that is covered by a private insurer.

Public insurance - Medicaid refers to state Medicaid funds.

Public insurance - Medicare FFS (Fee-for-Service) refers to funds from the government in which doctors and other health care providers are paid for each service provided to a candidate. Includes Medicare part A, part B and part D. Medicare part A (hospital) must be in place to be considered primary payer. For additional information about Medicare, see http://www.medicare.gov/.

Public insurance - Medicare & Choice refers to funds from the government in which doctors and other health care providers are paid for each service provided to a candidate, along with additional benefits such as coordination of care or reducing-out-of-pocket expenses. Sometimes a candidate may receive additional benefits such as prescription drugs. For additional information about Medicare, see http://www.medicare.gov/.

Public insurance - CHIP (Children's Health Insurance Program)

Public insurance - Department of VA refers to funds from the Veterans Administration.

Public insurance - Other government refers to funds from another government agency.

Self indicates that the candidate will pay for the cost of transplant.

Donation indicates that a company, institution, or individual(s) donated funds to pay for the transplant and care of the candidate.

Free Care indicates that the transplant hospital will not charge candidate for the costs of the transplant operation.

Pending is used if the source of payment is not yet determined (Primary only).

Foreign Government, Specify refers to funds provided by a foreign government (Primary only) Specify the foreign country in the space provided. (List of Foreign Country codes)

Clinical Information: AT LISTING

Height Date of Measurement:(Complete for candidates 18 years of age or younger.) Enter the date, using the 8-digit format of MM/DD/YYYY, the candidate’s height was measured.

Height: Enter the height of the candidate at the time of listing in the appropriate space, in feet and inches or centimeters. If the candidate’s height is unavailable, select the appropriate status from the ST field (Missing, Unknown, N/A, Not Done). This field is required. (List of Status codes) For candidates 18 years old or younger at the time of listing, UNet will generate and display calculated percentiles based on the 2000 CDC growth charts.

Weight Date of Measurement:(Complete for candidates 18 years of age or younger.) Enter the date, using the 8-digit format of MM/DD/YYYY, the candidate’s weight was measured.

Weight: Enter the weight of the candidate at the time of listing in the appropriate space, in pounds or kilograms. If the candidate’s weight is unavailable, select the appropriate status from the ST field (Missing, Unknown, N/A, Not Done).  This field is required. (List of Status codes) For candidates 18 years old or younger at the time of listing, UNet will generate and display calculated percentiles based on the 2000 CDC growth charts.

BMI (Body Mass Index): The candidate's BMI will display. For candidates less than 20 years of age at the time of listing, UNet will generate and display calculated percentiles based on the 2000 CDC growth charts.

Percentiles are the most commonly used clinical indicator to assess the size and growth patterns of individual children in the United States. Percentiles rank the position of an individual by indicating what percent of the reference population the individual would equal or exceed (i.e. on the weight-for-age growth charts, a 5 year-old girl whose weight is at the 25th percentile, weighs the same or more than 25 percent of the reference population of 5-year-old girls, and weighs less than 75 percent of the 5-year-old girls in the reference population). For additional information about CDC growth charts, see http://www.cdc.gov/.

Note: Users who check the BMI percentiles against the CDC calculator may notice a discrepancy that is caused by the CDC calculator using 1 decimal place for height and weight and UNet using 4 decimal places for weight and 2 for height.

ABO Blood Group: The candidate's blood type will be displayed. If the blood type is incorrect, correction must be completed on the active waitlist. If the candidate has been removed from the active waitlist, you may select the candidate's correct blood type directly in the record. (List of ABO Blood Type codes)

A
A1
A1B
A2
A2B
AB
B
O
Z (In Utero Only)

Primary Diagnosis: Select the primary diagnosis for the disease requiring a transplant at the time of listing for this candidate. If the candidate has had a previous transplant for the same organ type, use Retransplant/Graft Failure as the primary diagnosis for that organ. If an Other code is selected, use the blank provided to specify the Other diagnosis. This field is required.(List of Pancreas Diagnosis codes)

General Medical Factors:

Diabetes: If the candidate does not have diabetes at time of listing, select No. If the candidate has diabetes, select Type I or Type II. If the candidate has any type of drug-induced diabetes, select Type Other. If the candidate has diabetes but the type is unknown, select Type Unknown. A patient should not be considered as having diabetes based on gestational diabetes only. If this information is unknown, select Diabetes Status Unknown. This field is required. (List of Diabetes codes)

No
Type I is defined as a disease in which the body does not produce any insulin, most often occurring in children and young adults. People with Type 1 diabetes must take daily insulin injections to stay alive. Type 1 diabetes accounts for 5 to 10 percent of diabetes.
Type II is defined as a metabolic disorder resulting from the body's inability to make enough, or properly use, insulin. It is the most common form of the disease. Type 2 Diabetes accounts for 90 to 95 percent of diabetes.
Type Other
Type Unknown
Diabetes Status Unknown

Patient on insulin? Select Yes, No, or UNK to indicate whether the patient is on insulin. This field is required.

If Yes, complete the following fields:

Date insulin initiated: Enter the date insulin initiated using the standard 8-digit numeric format of MM/DD/YYYY. Date must be after date of birth and before and/or equal to today's date. If unavailable, select the appropriate status from the ST field (N/A, Not Done, Missing, Unknown). This field is required.

Average total insulin dosage per day: Enter the average daily total insulin dosage units in the space provided. Average daily insulin dose should be a total including all insulin administered in any form per day (short term, long term, by pump, subcutaneous). The insulin dosage units must be between 1 and 1000. If the value is unavailable, select the appropriate status from the ST field (N/A, Not Done, Missing, Unknown). This field is required.

Insulin duration of use: Enter the insulin duration of use in the space provided. If unavailable, select the appropriate status from the ST field (N/A, Not Done, Missing, Unknown). This field is required.

Symptomatic Peripheral Vascular Disease: If the candidate is experiencing intermittent claudication, diminished peripheral pulses or other signs and symptoms of peripheral vascular disease at the time of listing, select Yes. If not, select No. If unknown, select UNK. This field is required for adults.

Drug Treated COPD: If the candidate is taking any medication to control signs and symptoms of COPD (Chronic Obstructive Pulmonary Disease) at the time of listing, select Yes. If not, select No. If unknown, select UNK. This field is required for adults.

Any previous Malignancy: If the candidate has history of any previous malignant cancer prior to the time of listing, select Yes. If the candidate has not had a history of any previous malignant cancer prior to the time of listing, select No. If Yes is selected, select the type(s) of malignancy. If Other, specify is selected, indicate the type of tumor in the space provided. This field is required. (List of Malignancy codes)

Skin Melanoma
Skin Non-Melanoma
CNS Tumor
Genitourinary
Breast
Thyroid
Tongue/Throat/Larynx
Lung
Leukemia/Lymphoma
Liver
Other, specify

Total Serum Albumin: Enter the total serum albumin value in g/dl at time of listing. If the value is unavailable, select the appropriate status from the ST field (Missing, Unknown, N/A, Not Done). If the latest value is over a year old, select Status=Not Done. This field is required.

C-peptide Value: Enter the c-peptide value in ng/mL, range 0.0 - 15.00. If the value is unavailable, select the appropriate status from the ST field (Missing, Unknown, N/A, Not Done). For undetectable c-peptide values where the c-peptide value is reported as <X value, the threshold (i.e. X) is the acceptable value. For example, if c-peptide value is reported as <0.1 then the threshold is 0.1 and should be entered as “0.1” into the c-peptide value field. This field is required.

HbA1c: Enter the hbA1c percentage in the space provided. The value must be between 0.0 and 99.9. If unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown).

Pancreas Medical Factors

Age of Diabetes Onset: If diabetes is indicated in the General Medical Factors, enter the age of diabetes onset in years in the space provided. If the value is unavailable, select the appropriate status from the ST field (Missing, Unknown, N/A, Not Done). This field is required.