10d Thoracic Heart-Lung Pediatric Transplant Recipient Regis

Records
Pediatric Thoracic - Heart/Lung 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 Prostacyclin Infusion
d
e
f
g
c Prostacyclin Inhalation
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
Cognitive Development:

j Questionable Cognitive delay/impairment
k
l
m
n
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
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:
BMI:

in.

lbs

cm

ST=

kg

ST=

kg/m2

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 800-9784334 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

Most Recent Hemodynamics:

Inotropes/Vasodilators:
ST=

PA (sys)mm/Hg:

ST=

PA(dia) mm/Hg:

ST=

PA(mean) mm/Hg:

ST=

PCW(mean) mm/Hg:

ST=

CO L/min:

Most Recent Serum Creatinine:
Most Recent Total Bilirubin:

mg/dl

ST=

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

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

j >3 months prior to transplant
k
l
m
n
Tracheostomy:

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

Prior Thoracic Surgery other than prior transplant:

j YES n
k
l
m
n
j NO n
k
l
m
j UNK
k
l
m
j Unknown if there were prior sternotomies
k
l
m
n
j 0
k
l
m
n
j 1
k
l
m
n

If yes, number of prior sternotomies:

j 2
k
l
m
n
j 3
k
l
m
n
j 4
k
l
m
n
j 5+
k
l
m
n
j Unknown number of prior sternotomies
k
l
m
n
j Unknown if there were prior thoracotomies
k
l
m
n
j 0
k
l
m
n
j 1
k
l
m
n

If yes, number of prior thoracotomies:

j 2
k
l
m
n
j 3
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:

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

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:

Incidental Tumor found at time of Transplant:

min

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

j Adenoma
k
l
m
n
j Carcinoma
k
l
m
n
If yes, specify tumor type:

j Carcinoid
k
l
m
n
j Lymphoma
k
l
m
n
j Harmartoma
k
l
m
n
j Other Primary Lung Tumor, Specify
k
l
m
n

Specify:

Clinical Information : POST TRANSPLANT
Graft Status:

ST=

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

Dialysis:

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

Cardiac Re-Operation:

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

Other Surgical Procedures:

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

Time on inotropes other than Isoproterenol (Isuprel):

days

ST=

j No
k
l
m
n
j Ventilator support for <= 48 hours
k
l
m
n
Ventilator Support:

j Ventilator support for >48 hours but < 5 days
k
l
m
n
j Ventilator support >= 5 days
k
l
m
n
j Ventilator support, duration unknown
k
l
m
n
j Unknown Status
k
l
m
n

Reintubated:

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

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 NO n
k
l
m
j UNK
k
l
m

Airway Dehiscence:

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

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

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.

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

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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