25b Intestine Pediatric Transplant Recipient Registration Wo

Records
Pediatric Intestine 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
Primary Diagnosis:
Specify:

Secondary Diagnosis:
Specify:

Date: Last Seen, Retransplanted or Death

LIVING
Patient Status:

DEAD

RETRANSPLANTED

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 at time of transplant:

HOSPITALIZED NOT IN ICU

NOT HOSPITALIZED

Patient on Life Support:

YES

NO

Ventilator

Artificial Liver

Other Mechanism, Specify
Specify:

Functional Status:

Cognitive Development:

Definite Cognitive delay/impairment

Probable Cognitive delay/impairment

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
Academic Activity Level:

Unable to participate in academics due to disease or condition

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

Status Unknown

Source of Payment:
Primary:
Specify:

Secondary:

Clinical Information : PRETRANSPLANT

Date of Measurement:

Height:

ft.

Weight:
BMI:

in.

lbs
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].

Viral Detection:

Positive

Negative
HIV Serostatus:
Not Done

UNK/Cannot Disclose

Positive

Negative
CMV IgG:
Not Done

UNK/Cannot Disclose

Positive

Negative
CMV IgM:
Not Done

UNK/Cannot Disclose

HBV Core Antibody:

Positive

Negative

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

Total Bilirubin:

Serum Albumin:

Serum Creatinine:

Malignancies between listing and transplant:

YES

mg/dl

ST=

g/dl

ST=

mg/dl

ST=

NO

UNK

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

Skin Melanoma
If yes, specify type:

Skin Non-Melanoma

CNS Tumor

Genitourinary

Breast

Thyroid

Tongue/Throat/Larynx

Lung

Leukemia/Lymphoma

Liver

Hepatoblastoma

Hepatocellular Carcinoma

Other, specify
Specify:

Clinical Information : TRANSPLANT PROCEDURE
Multiple Organ Recipient

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

Procedure Information:

Intestine Venous Drainage:

Native Viscera Venous Drainage:

Whole Intestine
Procedure Type:
Intestine Segment

Portal

Systemic

Portal

Systemic

Whole Intestine with Pancreas (Technical Reasons)

Intestine Segment with Pancreas (Technical Reasons)

Organ Type:

Stomach

Small Intestine

Duodenum

Large Intestine

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

hrs

ST=

Risk Factors:

Recent Septicemia:

Exhausted Vascular Access:

Liver Dysfunction:

Previous Abdominal Surgery:

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

YES

NO

UNK

Number Previous Abdominal Surgeries:

Dilated/Non-Functional Bowel Segments:

ST=

YES

NO

UNK

Other:

Clinical Information : POST TRANSPLANT

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.

TPN Dependent:

YES

NO

IV Dependent:

Oral Feeding:

Tube Feed:

YES

NO

YES

NO

YES

NO

Date of Graft Failure:

RECURRENT TUMOR

ACUTE REJECTION

CHRONIC REJECTION

TECHNICAL PROBLEMS
Primary Cause of Graft Failure:

INFECTION

LYMPHOPROLIFERATIVE DISEASE

GVHD (Graft Versus Host Disease)

Ischemia/NEC (Necrotizing Enterocolitis) Like Syndrome

OTHER SPECIFY
Specify:

Yes, at least one episode treated with anti-rejection agent
Did patient have any acute 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

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)

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

OKT3 (Orthoclone, Muromonab)

Thymoglobulin

Simulect - Basiliximab

Zenapax - Daclizumab

Days

ST

Maint AR

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

Days

ST

Maint AR

Investigational Immunosuppressive Medications
Ind.
Zortress (Everolimus)
Other Immunosuppressive Medication, Specify

Days

ST

Maint AR