10b Thoracic Heart Pediatric Transplant Recipient Registrati

Records
Pediatric Thoracic - Heart Transplant Recipient Registration Worksheet
FORM APPROVED: O.M.B. NO. 0915-0157 Expiration Date: 10/31/2010
®
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:

Physician Name:
Physician NPI#:
Surgeon Name:
Surgeon 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 YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m

j IN INTENSIVE CARE UNIT
k
l
m
n
Medical Condition:

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 Extra Corporeal Membrane Oxygenation
d
e
f
g
c Intra Aortic Balloon Pump
d
e
f
g
c Prostaglandins
d
e
f
g
c Intravenous Inotropes
d
e
f
g
c Inhaled NO
d
e
f
g
c Ventilator
d
e
f
g
c Other Mechanism
d
e
f
g

Specify:

j NONE
k
l
m
n
j LVAD
k
l
m
n
Patient on Ventricular Assist Device

j RVAD
k
l
m
n
j TAH
k
l
m
n
j LVAD+RVAD
k
l
m
n

Life Support: VAD Brand1
Specify:
Life Support: VAD Brand2
Specify:

Functional Status:

j Definite Cognitive delay/impairment
k
l
m
n
j Probable Cognitive delay/impairment
k
l
m
n
j Questionable Cognitive delay/impairment
k
l
m
n

Cognitive Development:

j No Cognitive delay/impairment
k
l
m
n
j Not Assessed
k
l
m
n

j Definite Motor delay/impairment
k
l
m
n
j Probable Motor delay/impairment
k
l
m
n
j Questionable Motor delay/impairment
k
l
m
n

Motor Development:

j No Motor delay/impairment
k
l
m
n
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/ High School graduate or GED
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 or GED
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:

kg/m2

in.

cm

ST=

kg

ST=

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 800-978-4334 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

j 4
k
l
m
n
j 5+
k
l
m
n
j Unknown number of prior thoracotomies
k
l
m
n
Prior congenital cardiac surgery:

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

If yes, palliative surgery:

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

If yes, corrective surgery:

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

If yes, single ventricular physiology:

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

Pretransplant Titer Information:
Most Recent Anti-A Titer:

Sample Date:

Most Recent Anti-B Titer:

Sample Date:

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

Procedure Type:

j Heart
k
l
m
n
j Heart Lung
k
l
m
n
j Orthotopic Bicaval
k
l
m
n

Heart Procedure:

j Orthotopic Traditional
k
l
m
n
j Orthotopic Total (Bicaval, PV)
k
l
m
n
j Heterotopic
k
l
m
n

Was this a retransplant due to failure of a
previous thoracic graft:

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

Total Organ Ischemia Time (include cold, warm and anastomotic time):
Heart, Heart-Lung:

min

ST=

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.
Date of Graft Failure:

j Primary Non-Function
k
l
m
n
Primary Cause of Graft Failure:

j Acute Rejection
k
l
m
n
j Chronic Rejection/Atherosclerosis
k
l
m
n
j Other, Specify
k
l
m
n

Specify:
Most Recent Anti-A Titer:

Sample Date:

Most Recent Anti-B Titer:

Sample Date:

Events Prior to Discharge:
Any Drug Treated Infection:

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

Stroke:

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

Dialysis:

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

Cardiac Re-Operation:

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

Other Surgical Procedures:

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

Time on inotropes other than Isoproterenol
(Isuprel):

days

Permanent Pacemaker:

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

Chest drain >2 weeks:

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

Airway Dehiscence:

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

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

If Yes, check all that apply:

c Ganciclovir (Cytovene)
d
e
f
g
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 nonimmunosuppressive medications.

Ind. Days

ST

Maint AR

Steroids
(Prednisone,Methylprednisolone,Solumedrol,Medrol,Decadron)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Atgam (ATG)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

OKT3 (Orthoclone, Muromonab)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Thymoglobulin

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Simulect - Basiliximab

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Zenapax - Daclizumab

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Azathioprine (AZA, Imuran)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

EON (Generic Cyclosporine)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Gengraf (Abbott Cyclosporine)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other generic Cyclosporine, specify brand:

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Neoral (CyA-NOF)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Sandimmune (Cyclosporine A)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

CellCept (Mycophenolate Mofetil; MMF)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Generic MMF (Generic CellCept)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Prograf (Tacrolimus, FK506)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Generic Tacrolimus (Generic Prograf)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Modified Release Tacrolimus FK506E (MR4)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Sirolimus (RAPA, Rapamycin, Rapamune)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Myfortic (Mycophenolate Sodium)

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

Other Immunosuppressive Medications
Ind.
Campath - Alemtuzumab (anti-CD52)

c
d
e
f
g

Days

ST

Maint

c
d
e
f
g

AR

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

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

Other Immunosuppressive Medication, Specify

c
d
e
f
g

c
d
e
f
g

c
d
e
f
g

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Comments:

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