OPTN- Pancreas Follow-up

Pancreas Transplant Recipient Follow-up (TRF)
Record Field Descriptions
Transplant Recipient Follow-up (TRF) records are generated in Tiedi® at six months, one year and
annually thereafter following transplantation, until either graft failure, recipient death or lost to follow-up
is reported.
The TRF record is to be completed by the transplant center responsible for follow-up of the recipient at
intervals of six months, one year and annually thereafter. The record is to contain only the applicable
patient information since the last follow-up period. It is not to contain information pertaining solely to the
previous or next follow-up period. For example: the 6-month follow-up should contain information from
the time after the TRR was completed to the 6-month transplant anniversary date; the 1-year follow-up
should contain information from the day after the 6-month transplant anniversary date to the 1-year
transplant anniversary date; the 2-year follow-up should contain information from the day after the 1year transplant anniversary date to the 2-year anniversary date.
If the recipient dies or experiences a graft failure between follow-up intervals, complete an interim
record containing the information pertinent to death or graft failure.
TRF records generated before June 30, 2002 are forgiven except for the one-year, three-year,
death/graft failure or most recently expected follow-up record. Amnesty records may be accessed by
selecting the Expected/Amnesty and/or Amnesty option on the Search page. (For additional
information, see Searching for Patient Records and Records Generation.)
If the patient is lost to follow-up, follow the steps for Reporting Lost to Follow-up.
The TRF record must be completed within 30 days from the record generation date. See OPTN/UNOS
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 UNetSM Help Desk at 1800-978-4334.
Recipient Information
Name: Verify the last name, first name and middle initial of the transplant recipient is correct. If the
information is incorrect, corrections may be made on the recipient's TCR record.
DOB: Verify the displayed date is the recipient's date of birth. If the information is incorrect, corrections
may be made on the recipient's TCR record.
SSN: Verify the recipient's social security number is correct. If the information is incorrect, contact the
Help Desk at 1-800-978-4334.
Gender: Verify the recipient's gender is correct. If the information is incorrect, corrections may be made
on the recipient's TCR record.
HIC: Verify the 9 to 11 character Health Insurance Claim number for the recipient indicated on the
recipient's most recently updated TCR record is correct. If the recipient does not have a HIC number,
you may leave this field blank.
Tx Date: The recipient's transplant date, reported in the Recipient Feedback, will display. Verify the
transplant date is the date of the beginning of the first anastomosis. If the operation started in the
evening and the first anastomosis began early the next morning, the transplant date is the date that the
first anastomosis began. The transplant is considered complete when the cavity is closed and the final
skin stitch/staple is applied.
Previous Follow-up: The recipient's follow-up status, reported in the previous TRF record, will display.
Verify the recipient's previous follow-up status is correct.

Previous Px Stat Date: The recipient's patient status date, reported in the previous TRF record, will
display. Verify the recipient's previous patient status date is correct.
Transplant Discharge Date: Enter the date the recipient was released to go home, or verify that the
discharge date displayed is the date the recipient was released to go home. The patient's hospital stay
includes total time spent in different units of the hospital, including medical and rehab. This field is
required.
Note: The Transplant Discharge Date can only be edited on the patient's TRR, 6-month TRF and
1-year TRF. To correct this information on a follow-up that is after the 1-year TRF, access
one of these three records and enter the correct date. The corrected information will
automatically update on the other records.
State of Permanent Residence: Select the name of the state, of the recipient's permanent address, at
the time of follow-up. This is a required field. (List of State codes)
Zip Code: Enter the recipient's zip code, of their permanent address, at the time of follow-up.
Provider Information
Recipient Center: The recipient center will display. Verify that the transplant center name, center code,
and the provider number, (6-character Medicare identification number of the hospital where the
transplant recipient was transplanted) are correct.
Followup Center: The follow-up center, reported in the recipient's previous validated TRF record, will
display. Verify the center name, center code and provider number for the center following the patient.
Physician Name: Enter the name of the physician who is following the patient.
NPI #: Enter the 10-character CMS (Center for Medicare and Medicaid Services, formerly HCFA)
assigned National Provider Identifier of the transplant physician. Your hospital billing office may be able
to obtain this number for you.
Follow-up Care Provided By: Indicate where the follow-up care was provided. If Other Specify is
selected, specify the provider in the space provided. (List of Provider Type codes)
Transplant Center
Non Transplant Center Specialty Physician
Primary Care Physician
Other Specify
Donor Information
UNOS Donor ID #: The UNOS Donor ID number, reported in the Recipient Feedback, will display.
Each potential donor is assigned an identification number by OPTN/UNOS. This ID number
corresponds to the date the donor information was entered into the OPTN/UNOS computer system.
Donor Type: The donor type, reported in the Recipient Feedback, will display. Verify the recipient's
donor type is correct. If the information is incorrect, contact the Help Desk at 1-800-978-4334.
Deceased indicates the donor was not living at the time of donation.
Living indicates the donor was living at the time of donation.
Patient Status (At Time of Follow-up)
Date: Last Seen, Retransplanted or Death: Enter the date the patient was last seen, or the date of
death, or retransplant for this recipient, using the standard 8-digit numeric format of MM/DD/YYYY. The
follow-up records (6-month, 1-year, 2-year, etc.) are to be completed within 30 days of the 6-month and
yearly anniversaries of the transplant date. If the recipient died or the graft failed, and you have not
completed an interim follow-up indicating these events, the 6-month and annual follow-ups should be
completed indicating one of those two events.

Patient Status: If the recipient is living at the time of follow-up, select Living. If the recipient died
during this follow-up period, select Dead. If the recipient received another kidney from a different donor
during the follow-up period, select Retransplanted. If Dead is selected, indicate the cause of death.
(List of Patient Status codes)
Living
Dead
Retransplanted
Primary Cause of Death: If the Patient Status is Dead, select the patient's cause of death. If
an Other code is selected, enter the other cause of death in the space provided. (List of
Primary Cause of Death codes)
Contributory Cause of Death: If the Patient Status is Dead, select the patient's contributory
cause of death. If an Other code is selected, enter the other cause of death in the space
provided. (List of Contributory Cause of Death codes)
Contributory Cause of Death: If the Patient Status is Dead, select the patient's contributory
cause of death. If an Other code is selected, enter the other cause of death in the space
provided. (List of Contributory Cause of Death codes)
Hospitalizations:
Has the patient been hospitalized since the last patient status date: If the recipient has been
hospitalized since the last patient status report, regardless of patient status (living, dead, or
retransplanted), select Yes. If not, select No. If unknown, select UNK. If Yes is selected, indicate the
number of hospitalizations.
Note: Hospitalizations should ONLY include inpatient visits.
Number of hospitalizations: If the recipient was hospitalized, enter the number of
hospitalizations. If the number is unavailable, select the appropriate status from the ST field
(N/A, Not Done, Missing, Unknown). (List of Status codes)
Noncompliance:
Was there evidence of noncompliance with immunosuppression medication during this
follow-up period that compromised the patient's recovery: If the recipient had been noncompliant during this follow-up period, select Yes. If not, select No. If unknown, select UNK. This
field is optional.
Functional Status: Select the choice that best describes the recipient's functional status at the time of
follow-up. (List of Functional Status codes)
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 Scale will display for pediatrics aged 1 to 17.
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.
Physical Capacity: Select the choice that best describes the recipient’s physical capacity at the time of
follow-up. If the recipient's Medical Condition indicates they are hospitalized, select Not Applicable
(hospitalized). This field is optional for adult recipients only. (List of Physical Capacity codes)
No Limitations
Limited Mobility
Wheelchair bound or more limited
Not Applicable (hospitalized)
Unknown
Physical Capacity is the ability to perform bodily activities such as walking, dressing, bathing,
grooming, etc.
Cognitive Development: (Complete for recipients younger than 18 years of age at transplant and
younger than 26 years of age at follow-up.) Select the choice that best describes the recipient's
cognitive development at the time of follow-up. (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 recipients younger than 18 years of age at transplant and younger
than 26 years of age at follow-up.) Select the choice that best describes the recipient's motor
development at the time of follow-up. (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 recipients 19 years of age or older.) If the recipient was working for
income at the time of follow-up, select Yes. If not, select No. If reporting the recipient's death, indicate if
the recipient was working for income just prior to death.
If No, Not Working Due To: If No is selected, indicate the reason why the recipient was not
working. This field is optional for adult recipients only. (List of Not Work Reason codes)
Disability - A physical or mental impairment that interferes with or prevents a candidate from
working (e.g. arthritis, mental retardation, cerebral palsy, etc).
Demands of Treatment - An urgent medical treatment that prevents a candidate from working
(e.g. Dialysis).
Insurance Conflict - Any differences between a candidate and insurance company that
prevents them from working.
Inability to Find Work - The lack of one's ability to find work (e.g. lack of transportation, work
experience, over qualification, unavailable work, etc.).
Patient Choice - Homemaker - A candidate who chooses to manage their own household,
instead of performing work for pay.
Patient Choice - Student Full Time/Part Time - A candidate who is enrolled and/or
participating in college.
Patient Choice - Retired - A candidate who no longer has an active working life such as an
occupation, business or office job.
Patient Choice - Other - Any reason not listed above that would prevent a candidate from
working.
Not Applicable - Hospitalized - Select only if the patient's Medical Condition indicates they
are in the hospital.
Unknown
If Yes: If Yes is selected, indicate the recipient's working status. This field is optional for adult
recipients only. (List of Working codes)
Working Full Time
Working Part Time due to Demands of Treatment
Working Part Time due to Disability
Working Part Time due to Insurance Conflict
Working Part Time due to Inability to Find Full Time Work
Working Part Time due to Patient Choice
Working Part Time Reason Unknown
Working, Part Time vs. Full Time Unknown
Academic Progress: (Complete for recipients less than 19 years of age.) Select the choice that best
describes the recipient's academic progress at the time of follow-up. If reporting the recipient's death,
select the choice that best describes the recipient's progress just prior to death. If the candidate is less
than 5 years old or has graduated from high school, select Not Applicable < 5 years old/High School
graduate or GED. (List of Academic Progress codes)
Within One Grade Level of Peers
Delayed Grade Level
Special Education
Not Applicable < 5 years old/High School graduate or GED
Status Unknown
Academic Activity Level: (Complete for recipients less than 19 years of age.) Select the choice that
best describes the recipient's academic activity level at the time of follow-up. If reporting the recipient's
death, select the choice that best describes the recipient's academic activity just prior to death. If the

candidate is less than 5 years old or has graduated from high school, select Not Applicable < 5 years
old/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 < 5 years old/High School graduate or GED
Status Unknown
Primary Insurance at Follow-up: Select the recipient's source of primary payment (largest contributor)
during the follow-up period. (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 recipient. For
additional information about Medicare, see http://www.medicare.gov/Choices/Overview.asp.
Public insurance - Medicare & Choice (also known as Medicare Managed Care) refers to funds
from the government in which doctors and other health care providers are paid for each service
provided to a recipient, along with additional benefits such as coordination of care or reducing-outof-pocket expenses. Sometimes a recipient may receive additional benefits such as prescription
drugs. For additional information about Medicare, see
http://www.medicare.gov/Choices/Overview.asp.
Public insurance - CHIP (Children's Health Insurance Program)
Public insurance - Department of VA refers to funds from the Veterans Administration.
Public insurance - Other government
Self indicates that the cost of follow-up will be paid for by the recipient.
Donation indicates that a company, institution, or individual(s) donated funds to pay for the followup period and care of the recipient.
Free Care indicates that the transplant hospital will not charge recipient for the costs of the followup period.
Foreign Government refers to funds provided by foreign government (Primary only). Specify
foreign country in the space provided. (List of Foreign Country codes)
Unknown
Clinical Information
Date of Measurement: (Complete for recipients younger than 18 years of age at transplant and
younger than 26 years of age at follow-up.) Enter the date, using the 8-digit format of MM/DD/YYYY,
the recipient’s height and weight were measured. This field is required.
Height: Enter the height of the recipient at the time of follow-up in the appropriate space, in feet and
inches or centimeters. If the recipient’s height is unavailable, select the appropriate status from the ST
field (N/A, Not Done, Missing, Unknown). (List of Status codes) For recipients 18 years old or
younger at the time of follow-up, UNet will generate and display calculated percentiles based on the
2000 CDC growth charts. This field is required for pediatric recipients only.
Weight: Enter the weight of the recipient at the time of follow-up in the appropriate space, in pounds or
kilograms. If the recipient’s weight is unavailable, select the appropriate status from the ST field (N/A,
Not Done, Missing, Unknown). (List of Status codes) For recipients 18 years old or younger at the
time of follow-up, UNet will generate and display calculated percentiles based on the 2000 CDC growth
charts. This field is required.

BMI (Body Mass Index): For candidates less than 20 years of age during the follow-up period, 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 weightfor-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 UNetsm using
4 decimal places for weight and 2 for height.
Graft Status: Select the status that best describes the pancreas graft status.
Note: If death is indicated for the recipient, and the death was a result of some other factor
unrelated to graft failure, select Functioning.
Functioning: The graft has sufficient function so that the recipient is NOT receiving any insulin or
oral medication for blood sugar control.
Partial Function: The patient is taking some insulin, but < 50% of the usual amount taken before
transplant, or C-Peptide is present.
Failed: The graft has totally failed and the patient is completely dependent upon insulin or oral
medication for blood sugar control.
If Partial Function or Failed is selected, indicate Method of blood sugar control. (List of
Blood Sugar Control codes) Check all that apply.
Insulin
Oral medication
Diet
No Treatment
Date insulin/medication resumed: If Insulin or Oral medication is selected, enter
the date using the standard 8 digit numeric format of MM/DD/YYYY.
If Failed is selected, complete the following fields:
Date of Failure: Enter the date of graft failure using the standard 8-digit numeric format of
MM/DD/YYYY.
Pancreas Graft Removed: If the pancreas graft has totally failed, the recipient is
completely dependent on insulin for blood glucose control, and the pancreas graft was
removed, select Yes. If not, select No. If unknown, select Unknown. This field is
optional.
Date Pancreas Graft Removed: If Yes is selected, enter the date the pancreas
graft was removed using the standard 8-digit numeric format MM/DD/YYYY. This
field is optional.
Primary Causes of Graft Failure: Select the causes of graft failure. If Other, Specify
is selected, enter the cause of failure in the space provided. (List of Graft Failure
codes)
Graft/Vascular Thrombosis
Infection
Bleeding
Anastomotic Leak
Primary Non-Function
Acute Rejection

Chronic Rejection
Hyperacute Rejection
Biopsy Proven Isletitis
Pancreatitis
Other, Specify
Note: The date of failure and the date insulin was resumed should be the same, unless the
patient has a previous partial graft function reported.
Contributory causes of graft failure: For each of the causes listed select Yes, No, or UNK to
indicate whether each is a contributory cause of graft failure. Select No for the primary cause,
since it cannot be both primary and secondary cause of graft failure. If Other, Specify is
selected, specify the cause in the space provided.
Graft/Vascular Thrombosis
Infection
Bleeding
Anastomotic Leak
Acute Rejection
Chronic Rejection
Biopsy Proven Isletitis
Pancreatitis
Patient Noncompliance
Other, Specify
Conv.From Bladder to Enteric Drain Performed: If the pancreas graft duct has been changed from
bladder to enteric during this follow-up period, select Yes. If not, select No. If unknown, select UNK. If
Yes is selected, indicate when the conversion occurred. On the recipient's TRR, if Enteric w/Roux-EnY or Enteric w/o Roux-En-Y was selected for Duct Management, this question does not apply for this
recipient and you must select N/A.
If Yes, Enteric Drainage Date: If Yes is selected, enter the date of the conversion during this
follow-up period using the standard 8-digit numeric format of MM/DD/YYYY.
Serum Amylase: Enter the last serum amylase level of this follow-up period in u/L. If the value is not
available, select the status from the ST field (N/A, Not Done, Missing, Unknown). If the Patient
Status is Retransplanted for the pancreas, this field is not applicable. This field is optional.
Most Recent Serum Creatinine: Enter the most recent serum creatinine, in mg/dl, available. If
unavailable, select the status from the ST field (N/A, Not Done, Missing, Unknown). (List of Status
codes)
Pancreas Transplant Complications (Not leading to graft failure): For each of the complications
listed indicate if the complication occurred during this follow-up period. Do not select Yes if the
complication contributed to failure of the pancreas graft.
Pancreatitis: If the recipient was diagnosed during this follow-up period as having pancreatitis,
select Yes. If not, select No.
Anastomotic Leak: If the recipient exhibited signs and symptoms of an anastomotic leak during
this follow-up period, select Yes. If not, select No.
Abscess or Local Infection: If the recipient exhibited signs and symptoms of abscess or local
infection during this follow-up period, select Yes. If not, select No.
Other Complications: If a complication other than those listed occurred during this follow-up
period, enter the complication in the space provided.
Did patient have any acute rejection episodes during the follow-up period: If the recipient
experienced at least one episode during this follow-up period, select Yes. If not, select No. If unknown,
select Unknown. If Yes is selected, indicate if a biopsy was done to confirm acute rejection. (List of
Any Acute Rejection Episodes codes)

Yes, at least one episode treated with anti-rejection agent
Yes, none was treated with additional anti-rejection agent
No
Unknown
Was Biopsy done to confirm acute rejection: If the recipient had an acute kidney rejection
episode, indicate whether biopsy confirmed acute rejection by selecting Yes. If a biopsy was not
done, select Biopsy not done. If unknown, select Unknown. This field is optional. (List of Biopsy
Confirmed codes)
Biopsy not done
Yes, rejection confirmed
Yes, rejection not confirmed
Unknown
Postransplant Malignancy: If the recipient has been diagnosed with any malignant cancer since the
last follow-up, select Yes. If not, select No. If unknown, select UNK. If Yes is selected, at least one of
the fields listed below must be completed. A Post Transplant Malignancy record will generate when one
or more of the fields listed below is selected. For additional information, see Post Transplant
Malignancy Record Fields.
Donor Related: If the malignancy is donor related, select Yes . If not, select No. If unknown, select
UNK. If Yes is selected, the Donor Related section will be displayed on the Post Transplant
Malignancy record. For additional information, see Post Transplant Malignancy Record Fields Donor Related.
Recurrence of Pre-Tx tumor: If a pre-transplant tumor has recurred, select Yes. If not, select No.
If unknown, select UNK. If Yes is selected, the Recurrence of Pre-transplant Malignancy section
will be displayed on the Post Transplant Malignancy record. For additional information, see Post
Transplant Malignancy Record Fields - Recurrence of Pretransplant Malignancy.
De Novo Solid Tumor: If the cancer was a De Novo solid tumor, select Yes If not, select No. If
unknown, select UNK. If Yes is selected, the Post Transplant De Novo Solid Tumor section will be
displayed on the Post Transplant Malignancy record. For additional information, see Post
Transplant Malignancy Record Fields - Post Transplant De Novo Solid Tumor.
De Novo Lymphoproliferative disease and Lymphoma: If the cancer was post transplant
lymphoproliferative disease or lymphoma, select Yes . If not, select No. If unknown, select UNK. If
Yes is selected, the Post Tx Lymphoproliferative Disease and Lymphoma section will be displayed
on the Post Transplant Malignancy record. For additional information, see Post Transplant
Malignancy Record Fields - Post Tx Lymphoproliferative Disease and Lymphoma.
Note: Please report each type of malignancy only once in the follow-up process.
Note: When a patient has a tumor during one follow up period and the tumor continues into the next
follow-up period without going away, the tumor should only be reported on that first follow-up
record and not reported on the next follow-up record. The tumor should be reported on
subsequent follow-up records ONLY if the tumor goes away and then returns in the next
follow-up period.
Treatment
Biological or Anti-viral Therapy: If biological or anti-viral therapy is being administered to the
recipient, select Yes. If not, select No. If unknown or can't disclose, select Unknown/Cannot Disclose.
If Yes is selected, check all that apply. If a therapy, other than those listed, was administered, select
Other, Specify and enter the therapy in the space provided. These fields are optional. (List of Anti-viral
Treatment codes)
Acyclovir (Zovirax)
Cytogam (CMV)
Gamimune

Gammagard
Ganciclovir (Cytovene)
Valgancyclovir (Valcyte)
HBIG (Hepatitis B Immune Globulin)
Flu Vaccine (Influenza Virus)
Lamivudine (Epivir) (for treatment of Hepatitis B)
Valacyclovir (Valtrex)
Other, Specify
Other Therapies: If the recipient received other therapies, select Yes. If not, select No. If Yes is
selected, check all that apply: These fields are optional. (List of Other Therapies codes)
Photopheresis
Plasmapheresis
Total Lymphoid Irradiation (TLI)
Note: If the recipient was removed from the waiting list with a code 21, indicating the recipient died
during the transplant procedure, select No for all Biologicals or Anti-viral.
Immunosuppressive Information

Previous Validated Maintenance Follow-up Medications: The follow-up Immunosuppression
medication(s) indicated in the patient's most recently validated Transplant Recipient Registration (TRR)
or Transplant Recipient Follow-up (TRF) record will be listed.
Note: If a drug cannot be indicated as Maintenance in the Transplant Recipient Registration
(TRR), then it cannot be indicated as Current Maintenance or Previous Maintenance in the
TRF. If the drug cannot be indicated as Anti-rejection in the TRR, then it cannot be indicated
as Anti-rejection in the TRF.
Were any medications given during the follow-up period for maintenance: (List of Changes to
Maintenance Medications codes)
If there were immunosuppressive medications during this follow-up period, select Yes, same
as validated TRR form. The drugs on the previously validated TRR will pre-populate.
If there have been no changes in medications during this follow-up period, select Yes, same
as previous validated report. The immunosuppressive medications selected as Current on
the previous validated report will automatically be checked off in the Previous and Current
columns of this follow-up record.
If there have been changes in medications during this follow-up period, select Yes, but
different than previous validated report. Then select the appropriate Immunosuppressive
Medications by placing a checkmark in the Current Maint or AR column.
If no medications were given during this follow-up period, select None given.
Note: If any medications were given during the 6-month follow-up period for maintenance,
immunosuppression medications from the patient's validated TRR will be listed.
Did the physician discontinue all maintenance immunosuppressive medications: If the
physician discontinued the patients immunosuppressive medications, select Yes. If the patient
stopped the medications themselves or they were stopped for some other reason, select No.
Did the patient participate in any clinical research protocol for immunosuppressive
medications: If the recipient participated in clinical research, select Yes. If not, select No. If Yes is
selected, enter the details in the space provided. This field is optional.

Immunosuppressive Medications
For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint),
Current Maintenance (Curr Maint) or Anti-rejection (AR) to indicate all medications that were
prescribed for the recipient during this follow-up period, and for what reason. If a medication was not
given, leave the associated box(es) blank.
Previous Maintenance (Prev Maint) includes all immunosuppressive medications given during the
report period, which covers the period from the last clinic visit to the current clinic visit, for varying
periods of time which may be either long-term or intermediate term with a tapering of the dosage
until the drug is either eliminated or replaced by another long-term maintenance drug (e.g.,
Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This
does not include any immunosuppressive medications given to treat rejection episodes.
Current Maintenance (Curr Maint) includes all immunosuppressive medications given at the time
of the current clinic visit to begin in the next report period for varying periods of time which may be
either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated
or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus,
Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any
immunosuppressive medications given to treat rejection episodes.
Note: If the recipient was taking maintenance medications during the follow-up period but is
now deceased, then select Yes, but different than previous validated report, and
check-off all applicable medications in the Previous column only. Do not check-off any
medications in the Current column.
Note: On Recipient Death (RD) records, any maintenance medications given during the followup period should be noted as Previous, and nothing should be noted in the Current
column.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the
purpose of treating an acute rejection episode since the last clinic visit (e.g., Methylprednisolone,
Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (e.g., from Tacrolimus to
Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs
should not be listed under AR immunosuppression, but should be listed under maintenance
immunosuppression.
Note: The Anti-rejection field refers to any anti-rejection medications since the last clinic visit,
not just at the time of the current clinic visit.
Note: As further clarification, drugs that are used with the intention to maintain recipients longterm are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate
Mofetil and Prednisone. These maintenance medications should not be listed as AR
medications to treat acute rejection. When patients have a true acute rejection, they are
given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in
addition to the maintenance medications. These are the medications that should be
selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new
monoclonal antibodies), select Previous Maint, or Current Maint, or AR next to Other
Immunosuppressive Medication field, and enter the full name of the medication in the space
provided. Do not list non-immunosuppressive medications.
Other Immunosuppressive Medications
For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint),
Current Maintenance (Curr Maint) or Anti-rejection (AR) to indicate all medications that were
prescribed for the recipient during this follow-up period, and for what reason. If a medication was not
given, leave the associated box(es) blank.

Previous Maintenance (Prev Maint) includes all immunosuppressive medications given during the
report period, which covers the period from the last clinic visit to the current clinic visit, for varying
periods of time which may be either long-term or intermediate term with a tapering of the dosage
until the drug is either eliminated or replaced by another long-term maintenance drug (e.g.,
Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This
does not include any immunosuppressive medications given to treat rejection episodes.
Current Maintenance (Curr Maint) includes all immunosuppressive medications given at the time
of the current clinic visit to begin in the next report period for varying periods of time which may be
either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated
or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus,
Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any
immunosuppressive medications given to treat rejection episodes.
Note: On Recipient Death (RD) records, any maintenance medications given during the followup period should be noted as Previous, and nothing should be noted in the Current
column.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the
purpose of treating an acute rejection episode since the last clinic visit (e.g., Methylprednisolone,
Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (e.g., from Tacrolimus to
Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs
should not be listed under AR immunosuppression, but should be listed under maintenance
immunosuppression.
Note: The Anti-rejection field refers to any anti-rejection medications since the last clinic visit,
not just at the time of the current clinic visit.
Note: As further clarification, drugs that are used with the intention to maintain recipients longterm are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate
Mofetil and Prednisone. These maintenance medications should not be listed as AR
medications to treat acute rejection. When patients have a true acute rejection, they are
given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in
addition to the maintenance medications. These are the medications that should be
selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new
monoclonal antibodies), select Previous Maint, or Current Maint, or AR next to Other
Immunosuppressive Medication field, and enter the full name of the medication in the space
provided. Do not list non-immunosuppressive medications.
Investigational Immunosuppressive Medications
For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint),
Current Maintenance (Curr Maint) or Anti-rejection (AR) to indicate all medications that were
prescribed for the recipient during this follow-up period, and for what reason. If a medication was not
given, leave the associated box(es) blank.
Previous Maintenance (Prev Maint) includes all immunosuppressive medications given during the
report period, which covers the period from the last clinic visit to the current clinic visit, for varying
periods of time which may be either long-term or intermediate term with a tapering of the dosage
until the drug is either eliminated or replaced by another long-term maintenance drug (e.g.,
Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This
does not include any immunosuppressive medications given to treat rejection episodes.
Current Maintenance (Curr Maint) includes all immunosuppressive medications given at the time
of the current clinic visit to begin in the next report period for varying periods of time which may be
either long-term or intermediate term with a tapering of the dosage until the drug is either eliminated
or replaced by another long-term maintenance drug (e.g., Prednisone, Cyclosporine, Tacrolimus,

Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any
immunosuppressive medications given to treat rejection episodes.
Note: On Recipient Death (RD) records, any maintenance medications given during this followup period should be noted as Previous, and nothing should be noted in the Current
column.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the
purpose of treating an acute rejection episode since the last clinic visit (e.g., Methylprednisolone,
Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (e.g., from Tacrolimus to
Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs
should not be listed under AR immunosuppression, but should be listed under maintenance
immunosuppression.
Note: The Anti-rejection field refers to any anti-rejection medications since the last clinic visit,
not just at the time of the current clinic visit.
Note: As further clarification, drugs that are used with the intention to maintain recipients longterm are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate
Mofetil and Prednisone. These maintenance medications should not be listed as AR
medications to treat acute rejection. When patients have a true acute rejection, they are
given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in
addition to the maintenance medications. These are the medications that should be
selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new
monoclonal antibodies), select Previous Maint, or Current Maint, or AR next to Other
Immunosuppressive Medication field, and enter the full name of the medication in the space
provided. Do not list non-immunosuppressive medications.
Drug Codes (List of Drug Codes)
Sandimmune (Cyclosporine A)
Neoral (CyA-NOF)
Prograf (Tacrolimus, FK506)
Sirolimus (RAPA, Rapamycin, Rapamune)
Leflunomide (LFL, Arava)
Azathioprine (AZA, Imuran)
CellCept (Mycophenolate Mofetil, MMF)
Cyclophosphamide (Cytoxan)
Methotrexate (Folex, PFS, Mexate-AQ, Rheumatrex)
Atgam (ATG)
OKT3 (Orthoclone, Muromonab)
Thymoglobulin
Zenapax - Daclizumab
Simulect - Basiliximab
Gengraf (Abbott Cyclosporine)
Everolimus (RAD, Certican)
EON (Generic Cyclosporine)
Myfortic (Mycophenolate Sodium)
Other generic Cyclosporine, specify brand:
Steroids (Prednisone,Methylprednisolone,Solumedrol,Medrol,Decadron)
Campath - Alemtuzumab (anti-CD52)
FTY 720
Rituximab
Modified Release Tacrolimus FK506E (MR4)
Generic Tacrolimus (Generic Prograf)
Generic MMF (Generic CellCept)

Other Immunosuppressive Medication, Specify
Other Immunosuppressive Medication, Specify