Form 13b KidneyPediatric Registration

Records
Pediatric Kidney Transplant Recipient Registration Worksheet
The revised worksheet sample is for reference purposes only and is pending OMB approval.
Note: These worksheets are provided to function as a guide to what data will be required in the online TIEDI

B.

application. Currently in the worksheet, a red asterisk is
B.

displayed by fields that are required, independent of what other data may be provided. Based on data provided through the online TIEDI application, additional fields
that are dependent on responses provided in these required fields may become required as well. However, since those fields are not required in every case, they are not
marked with a red asterisk.

Recipient Information
Name:

DOB:

SSN:

Gender:

HIC:

Tx Date:

State of Permanent Residence:
Permanent Zip:

-

Provider Information
Recipient Center:

Surgeon Name:
NPI:

Donor Information
UNOS Donor ID #:
Donor Type:

Patient Status
Primary Diagnosis:
Specify:

Date: Last Seen, Retransplanted or Death

j LIVING
k
l
m
n
Patient Status:

j DEAD
k
l
m
n
j RETRANSPLANTED
k
l
m
n

Primary Cause of Death:
Specify:

Contributory Cause of Death:
Specify:

Contributory Cause of Death:
Specify:

Transplant Hospitalization:
Date of Admission to Tx Center:
Date of Discharge from Tx Center:
Was patient hospitalized during the last 90 days prior
to the transplant admission:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

j IN INTENSIVE CARE UNIT
k
l
m
n
Medical Condition at time of transplant:

j HOSPITALIZED NOT IN ICU
k
l
m
n
j NOT HOSPITALIZED
k
l
m
n

Functional Status:

j Definite Cognitive delay/impairment (verified by IQ score <70 or
k
l
m
n
unambiguous behavioral observation)
j Probable Cognitive delay/impairment (not verified or unambiguous but
k
l
m
n
more likely than not, based on behavioral observation or other evidence)
Cognitive Development:

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

j No Cognitive delay/impairment (no obvious indicators of cognitive
k
l
m
n
delay/impairment)
j Not Assessed
k
l
m
n

j Definite Motor delay/impairment (verified by physical exam or unambiguous
k
l
m
n
behavioral observation)
j Probable Motor delay/impairment (not verified or unambiguous but more
k
l
m
n
likely than not, based on behavioral observation or other evidence)
Motor Development:

j Questionable Motor delay/impairment (not judged to be more likely than
k
l
m
n
not, but with some indications of motor delay/impairment)
j No Motor delay/impairment (no obvious indicators of motor
k
l
m
n
delay/impairment)
j Not Assessed
k
l
m
n

j Within One Grade Level of Peers
k
l
m
n
j Delayed Grade Level
k
l
m
n
Academic Progress:

j Special Education
k
l
m
n
j Not Applicable < 5 years old
k
l
m
n
j Status Unknown
k
l
m
n

j Full academic load
k
l
m
n

j Reduced academic load
k
l
m
n
j Unable to participate in academics due to disease or condition
k
l
m
n
j Unable to participate regularly in academics due to dialysis
k
l
m
n

Academic Activity Level:

j Not Applicable < 5 years old/ High School graduate
k
l
m
n
j Status Unknown
k
l
m
n
Source of Payment:
Primary:
Specify:
Secondary:

Clinical Information : PRETRANSPLANT
Previous Transplants:
Previous Transplant Organ

Previous Transplant Date

Previous Transplant Graft Fail Date

The three most recent transplants are listed here. Please contact the UNet Help Desk to confirm more than three previous transplants by calling 800978-4334 or by emailing [email protected].
Pretransplant Dialysis:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

If Yes, Date First Dialyzed:

ST=

Serum Creatinine at Time of Tx:

mg/dl

Viral Detection:

j Positive
k
l
m
n
HIV Serostatus:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n

CMV IgG:

j Negative
k
l
m
n
j Not Done
k
l
m
n

j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n
CMV IgM:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n

ST=

j Negative
k
l
m
n
HBV Core Antibody:

j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n

HBV Surface Antigen:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n

HCV Serostatus:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n
j Positive
k
l
m
n

EBV Serostatus:

j Negative
k
l
m
n
j Not Done
k
l
m
n
j UNK/Cannot Disclose
k
l
m
n

Was preimplantation kidney biopsy performed at the
transplant center:

j YES n
k
l
m
n
j NO
k
l
m

Did patient receive any pretransplant blood
transfusions:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Any tolerance induction technique used:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

j NO PREVIOUS PREGNANCY
k
l
m
n
j 1 PREVIOUS PREGNANCY
k
l
m
n
j 2 PREVIOUS PREGNANCIES
k
l
m
n
j 3 PREVIOUS PREGNANCIES
k
l
m
n
Previous Pregnancies:

j 4 PREVIOUS PREGNANCIES
k
l
m
n
j 5 PREVIOUS PREGNANCIES
k
l
m
n
j MORE THAN 5 PREVIOUS PREGNANCIES
k
l
m
n
j NOT APPLICABLE: < 10 years old
k
l
m
n
j UNKNOWN
k
l
m
n

Malignancies between listing and transplant:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

This question is NOT applicable for patients receiving living donor transplants who were never on the waiting list.

c Skin Melanoma
d
e
f
g
c Skin Non-Melanoma
d
e
f
g
c CNS Tumor
d
e
f
g
c Genitourinary
d
e
f
g
c Breast
d
e
f
g
If yes, specify type:

c Thyroid
d
e
f
g
c Tongue/Throat/Larynx
d
e
f
g
c Lung
d
e
f
g
c Leukemia/Lymphoma
d
e
f
g
c Liver
d
e
f
g
c Other, specify
d
e
f
g

Specify:

Is growth hormone therapy used between listing and
transplant:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

Bone Disease:
Fracture between listing and transplant:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m
c Spine-compression
d
e
f
g
fracture

Specify Location and number of fractures:

AVN (avascular necrosis):

# of fractures:

c Extremity
d
e
f
g

# of fractures:

c Other
d
e
f
g

# of fractures:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

Clinical Information : TRANSPLANT PROCEDURE
Multiple Organ Recipient
Were extra vessels used in the transplant procedure:
Vessel Donor ID:

Procedure Type:

Kidney Preservation Information:
Total Cold ischemia Time Right KI(OR EN-BLOC): (if
pumped, include pump time):

hrs

ST=

Total Warm Ischemia Time Right KI (OR EN-BLOC):
(Include Anastomotic time):

min

ST=

Total Cold ischemia Time Left KI (if pumped, include
pump time):

hrs

ST=

Total Warm ischemia Time Left KI (include

ST=

Anastomotic time):

min

ST=

j Ice
k
l
m
n
Kidney(s) received on:

j Pump
k
l
m
n
j N/A
k
l
m
n

Received on ice:

j Stayed on ice
k
l
m
n
j Put on pump
k
l
m
n

Received on pump:

j Stayed on pump
k
l
m
n
j Put on ice
k
l
m
n

If put on pump or stayed on pump:
Final resistance at transplant:

ST=

Final flow rate at transplant:

ST=

Incidental Tumor found at time of Transplant:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m
j Oncocytoma
k
l
m
n
j Renal Cell Carcinoma
k
l
m
n

If yes, specify tumor type:

j Carcinoid
k
l
m
n
j Adenoma
k
l
m
n
j Transitional Cell Carcinoma
k
l
m
n
j Other Primary Kidney Tumor, Specify.
k
l
m
n

Specify:

Clinical Information : POST TRANSPLANT
Graft Status:

j Functioning n
k
l
m
n
j Failed
k
l
m

If death is indicated for the recipient, and the death was a result of some other factor unrelated to graft failure, select Functioning.
Resumed Maintenance Dialysis:

j YES n
k
l
m
n
j NO
k
l
m

Date Maintenance Dialysis Resumed:
Select a Dialysis Provider:
Provider #:
Provider Name:
Date of Graft Failure:

j HYPERACUTE REJECTION
k
l
m
n
j ACUTE REJECTION
k
l
m
n

j PRIMARY FAILURE
k
l
m
n
j GRAFT THROMBOSIS
k
l
m
n
j INFECTION
k
l
m
n
Primary Cause of Graft Failure:

j SURGICAL COMPLICATIONS
k
l
m
n
j UROLOGICAL COMPLICATIONS
k
l
m
n
j RECURRENT DISEASE
k
l
m
n
j OTHER SPECIFY CAUSE
k
l
m
n

Specify:
Contributory causes of graft failure:
Acute Rejection:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Graft Thrombosis:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Infection:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

Surgical Complications:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

Urological Complications:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

Recurrent Disease:

j UNK
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m

Other, Specify:

Most Recent Serum Creatinine Prior to Discharge:

mg/dl

Kidney Produced > 40ml of Urine in First 24 Hours:

j YES n
k
l
m
n
j NO
k
l
m

Patient Need Dialysis within First Week:

j YES n
k
l
m
n
j NO
k
l
m

Creatinine decline by 25% or more in first 24 hours on
2 separate samples:

j YES n
k
l
m
n
j NO
k
l
m

ST=

j Yes, at least one episode treated with anti-rejection agent
k
l
m
n
Did patient have any acute rejection episodes
between transplant and discharge:

j Yes, none treated with additional anti-rejection agent
k
l
m
n
j No
k
l
m
n
j Biopsy not done
k
l
m
n

Was biopsy done to confirm acute rejection:

j Yes, rejection confirmed
k
l
m
n
j Yes, rejection not confirmed
k
l
m
n

Date of Measurement:
Height:

ft.

Weight:

lbs

in.

cm %ile ST=
kg

%ile ST=

kg/m2

BMI:

%ile

Treatment
Biological or Anti-viral Therapy:

j Unknown/Cannot disclose
k
l
m
j YES n
k
l
m
n
j NO n
k
l
m
c Acyclovir (Zovirax)
d
e
f
g
c Cytogam (CMV)
d
e
f
g
c Gamimune
d
e
f
g
c Gammagard
d
e
f
g
c Ganciclovir (Cytovene)
d
e
f
g

If Yes, check all that apply:

c Valgancyclovir (Valcyte)
d
e
f
g
c HBIG (Hepatitis B Immune Globulin)
d
e
f
g
c Flu Vaccine (Influenza Virus)
d
e
f
g
c Lamivudine (Epivir) (for treatment of Hepatitis B)
d
e
f
g
c Other, Specify
d
e
f
g
c Valacyclovir (Valtrex)
d
e
f
g

Specify:
Specify:

Other therapies:

j YES n
k
l
m
n
j NO
k
l
m
c Photopheresis
d
e
f
g

If Yes, check all that apply:

c Plasmapheresis
d
e
f
g
c Total Lymphoid Irradiation (TLI)
d
e
f
g

Immunosuppressive Information
Are any medications given currently for maintenance
or anti-rejection:

j YES n
k
l
m
n
j NO
k
l
m

Did the patient participate in any clinical research
protocol for immunosuppressive medications:

j YES n
k
l
m
n
j NO
k
l
m

If Yes, Specify:

Immunosuppressive Medications
View Immunosuppressive Medications
Definitions Of Immunosuppressive Medications

For each of the immunosuppressive medications listed, select Ind (Induction), Maint (Maintenance) or AR (Anti-rejection) to indicate all medications
that were prescribed for the recipient during the initial transplant hospitalization period, and for what reason. If a medication was not given, leave the
associated box(es) blank.
Induction (Ind) immunosuppression includes all medications given for a short finite period in the perioperative period for the purpose of preventing
acute rejection. Though the drugs may be continued after discharge for the first 30 days after transplant, it will not be used long-term for

immunosuppressive maintenance. Induction agents are usually polyclonal, monoclonal, or IL-2 receptor antibodies (example: Methylprednisolone,
Atgam, Thymoglobulin, OKT3, Simulect, or Zenapax). Some of these drugs might be used for another finite period for rejection therapy and would be
recorded as rejection therapy if used for this reason. For each induction medication indicated, write the total number of days the drug was actually
administered in the space provided. For example, if Simulect or Zenapax was given in 2 doses a week apart, then the total number of days would be
2, even if the second dose was given after the patient was discharged.
Maintenance (Maint) includes all immunosuppressive medications given before, during or after transplant 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 (example: Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any
immunosuppressive medications given to treat rejection episodes, or for induction.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode
during the initial post-transplant period or during a specific follow-up period, usually up to 30 days after the diagnosis of acute rejection (example:
Methylprednisolone, Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (example: 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.
If an immunosuppressive medication other than those listed is being administered (e.g., new monoclonal antibodies), select Ind, 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.

Ind. Days
Steroids
(Prednisone,Methylprednisolone,Solumedrol,Medrol,Decadron)

c
d
e
f
g

Atgam (ATG)

c
d
e
f
g

OKT3 (Orthoclone, Muromonab)

c
d
e
f
g

Thymoglobulin

c
d
e
f
g

Simulect - Basiliximab

c
d
e
f
g

Zenapax - Daclizumab

c
d
e
f
g

Azathioprine (AZA, Imuran)

c
d
e
f
g

EON (Generic Cyclosporine)

c
d
e
f
g

Gengraf (Abbott Cyclosporine)

c
d
e
f
g

Other generic Cyclosporine, specify brand:

c
d
e
f
g

Neoral (CyA-NOF)

c
d
e
f
g

Sandimmune (Cyclosporine A)

c
d
e
f
g

Mycophenolate Mofetil (MMF, Cellcept, RS61443)

c
d
e
f
g

Tacrolimus (Prograf, FK506)

c
d
e
f
g

Modified Release Tacrolimus FK506E (MR4)

c
d
e
f
g

Sirolimus (RAPA, Rapamycin, Rapamune)

ST

c
d
e
f
g

c
d
e
f
g

Myfortic (Mycophenolate Sodium)

Other Immunosuppressive Medications
Ind. Days

ST

Maint AR

Campath - Alemtuzumab (anti-CD52)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Cyclophosphamide (Cytoxan)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Leflunomide (LFL, Arava)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Methotrexate (Folex, PFS, Mexate-AQ,
Rheumatrex)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other Immunosuppressive Medication, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other Immunosuppressive Medication, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Rituximab

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Investigational Immunosuppressive Medications
Ind. Days

ST

Maint AR

Everolimus (RAD, Certican)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

FTY 720

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

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