Form 19b Kidney-Pancreas Pediatric Tranplant Recipient Registrati

Records
Pediatric Kidney-Pancreas Transplant Recipient Registration Worksheet
FORM APPROVED: O.M.B. NO. 0915-0157 Expiration Date: 12/31/2011
Note: These worksheets are provided to function as a guide to what data will be required in the online TIEDI ® application. Currently in the worksheet, a red asterisk
is 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
Kidney Primary Diagnosis:
Specify:

Pancreas Primary Diagnosis:
Specify:

Date: Last Seen, Retransplanted or Death

LIVING
Patient Status:

DEAD

RETRANSPLANTED

Retransplanted organ:

Kidney

Pancreas

Kidney/Pancreas

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:

YES

NO

UNK

IN INTENSIVE CARE UNIT
Medical Condition:

HOSPITALIZED NOT IN ICU

NOT HOSPITALIZED

Functional Status:

Definite Cognitive delay/impairment

Probable Cognitive delay/impairment
Cognitive Development:

Questionable Cognitive delay/impairment

No Cognitive delay/impairment

Not Assessed

Definite Motor delay/impairment

Probable Motor delay/impairment
Motor Development:

Questionable Motor delay/impairment

No Motor delay/impairment

Not Assessed

Within One Grade Level of Peers

Delayed Grade Level
Academic Progress:

Special Education

Not Applicable < 5 years old/ High School graduate or GED

Status Unknown

Full academic load

Reduced academic load

Unable to participate in academics due to disease or condition
Academic Activity Level:
Unable to participate regularly in academics due to dialysis

Not Applicable < 5 years old/ High School graduate or GED

Status Unknown

Kidney Source of Payment:
Primary:
Specify:

Secondary:
Pancreas Source of Payment:
Primary:
Specify:

Secondary:

Clinical Information : PRETRANSPLANT

Date of Measurement:

Height:

ft.

in.

Weight:
BMI:

kg/m

cm

ST=

kg

ST=

2

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:

YES

NO

UNK

If Yes, Date of Most Recent Initiation of Chronic
Maintenance Dialysis:

ST=

Average Daily Insulin Units:

ST=

Serum Creatinine at Time of Tx:

mg/dl

Viral Detection:

Positive

Negative
HIV Serostatus:
Not Done

UNK/Cannot Disclose

Positive

Negative
CMV IgG:
Not Done

UNK/Cannot Disclose

Positive
CMV IgM:

Negative

Not Done

ST=

UNK/Cannot Disclose

Positive

Negative
HBV Core Antibody:
Not Done

UNK/Cannot Disclose

Positive

Negative
HBV Surface Antigen:
Not Done

UNK/Cannot Disclose

Positive

Negative
HCV Serostatus:
Not Done

UNK/Cannot Disclose

Positive

Negative
EBV Serostatus:
Not Done

UNK/Cannot Disclose

Was preimplantation kidney biopsy performed at the
transplant center:

Did patient receive any pretransplant blood tranfusions:

Any tolerance induction technique used:

Previous Pregnancies:

YES

NO

YES

NO

UNK

YES

NO

UNK

NO PREVIOUS PREGNANCY

1 PREVIOUS PREGNANCY

2 PREVIOUS PREGNANCIES

3 PREVIOUS PREGNANCIES

4 PREVIOUS PREGNANCIES

5 PREVIOUS PREGNANCIES

MORE THAN 5 PREVIOUS PREGNANCIES

NOT APPLICABLE: < 10 years old

UNKNOWN

Malignancies between listing and transplant:

YES

NO

UNK

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

Skin Melanoma

Skin Non-Melanoma

CNS Tumor

Genitourinary

Breast
If yes, specify type:

Thyroid

Tongue/Throat/Larynx

Lung

Leukemia/Lymphoma

Liver

Other, specify
Specify:

Bone Disease:
Fracture in the past year (or since last follow-up):

YES

NO

UNK

# of fractures:

Spine-compression
fracture:
Specify Location and number of fractures:

# of fractures:

Extremity:

# of fractures:

Other:

AVN (avascular necrosis):

YES

NO

UNK

Clinical Information : TRANSPLANT PROCEDURE
Multiple Organ Recipient

Were extra vessels used in the transplant procedure:
Vessel Donor ID:

Procedure Type:

Surgical Information:

Before

Was the Pancreas revascularized before or after other
organs:

Simultaneous

After

Not Applicable

Iliac Fossa PA left/KI right

Iliac Fossa PA right/KI left
Surgical Incision:

Left

Midline

Right

INTRA-PERITONEAL
Graft Placement:

RETRO-PERITONEAL

PARTIAL INTRA/RETRO-PERITONEAL

Operative Technique:

Simultaneous Kidney-Pancreas

Cluster

Multi-Organ Non-Cluster

ENTERIC W/ROUX-EN-Y

ENTERIC W/O ROUX-EN-Y

CYSTOSTOMY
Duct Management:
DUCT INJECTION IMMEDIATE

DUCT INJECTION DELAYED

OTHER SPECIFY
Specify:

SYSTEMIC SYSTEM (ILIAC:CAVA)
Venous Vascular Management:

PORTAL SYSTEM (PORTAL OR TRIBUTARIES)

NA/Multi-organ cluster

CELIAC WITH PANCREAS

Y-GRAFT TO SPA & SMA

SPA TO SMA DIRECT
Arterial Reconstruction:
SPA TO SMA WITH INTERPOSITION

SPA ALONE

OTHER SPECIFY
Specify:

Venous Extension Graft:

YES

NO

Kidney and Pancreas 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 Anastomotic
time):

min

ST=

Total Pancreas Preservation Time (include Cold, Warm,
Anastomotic time):

hrs

ST=

Ice
Kidney(s) received on:

Pump

N/A

Stayed on ice
Received on ice:
Put on pump

Stayed on pump
Received on pump:
Put on ice
If put on pump or stayed on pump:
Final resistance at transplant:

ST=

Final flow rate at transplant:

Incidental Tumor found at time of Transplant:

ST=

YES

NO

UNK

Oncocytoma

Renal Cell Carcinoma

Carcinoid
If yes, specify tumor type:
Adenoma

Transitional Cell Carcinoma

Other Primary Kidney Tumor, Specify.
Specify:

Clinical Information : POST TRANSPLANT

Kidney Graft Status:

Functioning

Failed

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:

YES

NO

Date Maintenance Dialysis Resumed:
Select a Dialysis Provider:
Provider #:
Provider Name:

Kidney Date of Graft Failure:

HYPERACUTE REJECTION

ACUTE REJECTION

PRIMARY FAILURE

GRAFT THROMBOSIS
Kidney Primary Cause of Graft Failure:

INFECTION

SURGICAL COMPLICATIONS

UROLOGICAL COMPLICATIONS

RECURRENT DISEASE

OTHER SPECIFY CAUSE
Specify:
Contributory causes of graft failure:
Kidney Acute Rejection:

Kidney Graft Thrombosis:

Kidney Infection:

Surgical Complications:

Urological Complications:

Recurrent Disease:

Other, Specify:

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

Yes, at least one episode treated with anti-rejection agent
Did patient have any acute kidney rejection episodes
between transplant and discharge:

Yes, none treated with additional anti-rejection agent

No

Biopsy not done
Was biopsy done to confirm acute rejection:

Yes, rejection confirmed

Yes, rejection not confirmed

Is growth hormone therapy used between listing and transplant:

YES

Most Recent Serum Creatinine Prior to Discharge:

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

Patient Need Dialysis within First Week:

Creatinine Decline by 25% or More in First 24 Hours
on 2 separate samples:

Pancreas Graft Status:

NO

mg/dl

YES

NO

YES

NO

YES

NO

Functioning

UNK

ST=

Partial Function

Failed

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

Insulin

Oral medication
Method of blood sugar control: (check all that apply)
Diet

No Treatment
Date Insulin/Medication Resumed:

Date of Graft Failure Pancreas:

Pancreas Graft Removed:

If Yes, Date Pancreas Graft Removed:
Pancreas Primary Cause of Graft Failure:

YES

NO

UNK

Pancreas Primary Cause of Graft Failure/Specify:
Contributory causes of graft failure:
Pancreas Graft/Vascular Thrombosis:

Pancreas Infection:

Bleeding:

Anastomotic Leak:

Hyperacute Rejection:

Pancreas Acute Rejection:

Biopsy Proven Isletitis:

Pancreatitis:

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

Other, Specify:

Yes, at least one episode treated with anti-rejection agent
Did patient have any acute pancreas rejection episodes
between transplant and discharge:

Yes, none treated with additional anti-rejection agent

No

Biopsy not done
Was biopsy done to confirm acute rejection:

Yes, rejection confirmed

Yes, rejection not confirmed

Pancreas Transplant Complications:
(Not leading to graft failure.)

Pancreatitis:

Anastomotic Leak:

YES

NO

UNK

YES

NO

UNK

Abcess or Local Infection:

YES

NO

UNK

Other:

Weight Post Transplant:

lbs.

kg

Treatment

Biological or Anti-viral Therapy:

YES

NO

Unknown/Cannot disclose

Acyclovir (Zovirax)

Cytogam (CMV)

Gamimune

Gammagard

Ganciclovir (Cytovene)
If Yes, check all that apply:

Valgancyclovir (Valcyte)

HBIG (Hepatitis B Immune Globulin)

Flu Vaccine (Influenza Virus)

Lamivudine (Epivir) (for treatment of Hepatitis B)

Other, Specify

Valacyclovir (Valtrex)

Specify:
Specify:

Other therapies:

YES

NO

Photopheresis
If Yes, check all that apply:

Plasmapheresis

Total Lymphoid Irradiation (TLI)

ST=

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

YES

NO

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

YES

NO

If Yes, Specify:

Immunosuppressive Medications
View Immunosuppressive Medications

Definitions Of Immunosuppressive Medications

For each of the immunosuppressant medications listed, check Previous Maintenance (Prev Maint), Current Maintenance (Curr Maint) or Antirejection (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 (example: 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 current clinic visit to begin in the next report 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.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode
since the last clinic visit (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.
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.
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 nonimmunosuppressive 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

ST

Maint AR

Steroids
(Prednisone,Methylprednisolone,Solumedrol,Medrol,Deca
dron)
Atgam (ATG)

OKT3 (Orthoclone, Muromonab)

Thymoglobulin

Simulect - Basiliximab

Zenapax - Daclizumab

Azathioprine (AZA, Imuran)

EON (Generic Cyclosporine)

Gengraf (Abbott Cyclosporine)

Other generic Cyclosporine, specify brand:

Neoral (CyA-NOF)

Sandimmune (Cyclosporine A)

CellCept (Mycophenolate Mofetil; MMF)

Generic MMF (Generic CellCept)

Prograf (Tacrolimus, FK506)

Generic Tacrolimus (Generic Prograf)

Advagraf (Tacrolimus Extended or Modified Release)

Nulojix (Belatacept)

Sirolimus (RAPA, Rapamycin, Rapamune)

Myfortic (Mycophenolate Sodium)

Other Immunosuppressive Medications
Ind.

Days

ST

Maint AR

Ind.

Days

ST

Maint AR

Campath - Alemtuzumab (anti-CD52)
Cyclophosphamide (Cytoxan)
Leflunomide (LFL, Arava)
Methotrexate (Folex, PFS, Mexate-AQ,
Rheumatrex)
Other Immunosuppressive Medication, Specify
Rituximab

Investigational Immunosuppressive Medications

Zortress (Everolimus)
Other Immunosuppressive Medication, Specify