Form 25b Intestine Pediatric Registration

Records
Pediatric Intestine 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:
Secondary 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

Patient on Life Support:

j YES n
k
l
m
n
j NO
k
l
m
c Ventilator
d
e
f
g
c Artificial Liver
d
e
f
g
c Other Mechanism, Specify
d
e
f
g

Specify:

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
j Special Education
k
l
m
n

Academic Progress:

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

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
Date of Measurement:
Height:

ft.

Weight:

lbs

BMI:

in.

kg/m2

cm %ile ST=
kg

%ile ST=
%ile

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].
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

HBV Core Antibody:

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
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

Total Bilirubin:

mg/dl

ST=

Serum Albumin:

g/dl

ST=

Serum Creatinine:

mg/dl

ST=

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
c Thyroid
d
e
f
g
c Tongue/Throat/Larynx
d
e
f
g
c Lung
d
e
f
g
If yes, specify type:

c Leukemia/Lymphoma
d
e
f
g
c Hepatoblastoma
d
e
f
g
c Hepatocellular Carcinoma
d
e
f
g
c Liver
d
e
f
g
c Other, specify
d
e
f
g

Specify:

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

Procedure Information:
Intestine Only Venous Drainage:

j Portal n
k
l
m
n
j Systemic
k
l
m

Native Viscera Venous Drainage:

j Portal n
k
l
m
n
j Systemic
k
l
m
j Whole Intestine
k
l
m
n

Procedure Type:

j Intestine Segment
k
l
m
n
j Whole Intestine with Pancreas (Technical Reasons)
k
l
m
n
j Intestine Segment with Pancreas (Technical Reasons)
k
l
m
n

Organ Type:

c Stomach
d
e
f
g
c Small Intestine
d
e
f
g
c Duodenum
d
e
f
g
c Large Intestine
d
e
f
g

Preservation Information:
Total Ischemic Time (include cold, warm and
anastomotic time):

hrs

Risk Factors:
Recent Septicemia:

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

Exhausted Vascular Access:

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

ST=

Liver Dysfunction:

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

Previous Abdominal Surgery:

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

Number Previous Abdominal Surgeries:
Dilated/Non-Functional Bowel Segments:

ST=

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

Other:

Clinical Information : POST TRANSPLANT
Graft Status:

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

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

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

IV Dependent:

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

Oral Feeding:

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

Tube Feed:

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

Date of Graft Failure:

j RECURRENT TUMOR
k
l
m
n
j ACUTE REJECTION
k
l
m
n
j CHRONIC REJECTION
k
l
m
n
j TECHNICAL PROBLEMS
k
l
m
n
Primary Cause of Graft Failure:

j INFECTION
k
l
m
n
j LYMPHOPROLIFERATIVE DISEASE
k
l
m
n
j GVHD (Graft Versus Host Disease)
k
l
m
n
j ISCHEMIA/NEC (Necrotizing Enterocolitis) LIKE SYNDROME
k
l
m
n
j OTHER SPECIFY
k
l
m
n

Specify:

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

Treatment
Biological or Anti-viral Therapy:

j YES n
k
l
m
n
j NO n
k
l
m
j Unknown/Cannot disclose
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)

c
d
e
f
g

ST

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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