Form 9b Heart/Lung Pediatric Registration

Records
Pediatric Heart/Lung Transplant Candidate Registration Worksheet
The revised worksheet sample is for reference purposes only and is pending OMB approval.
B.

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
B.

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.

Provider Information
Recipient Center:

Candidate Information
Date of Listing or
Add:

Organ Registered:

Last Name:

First Name:

MI:

Previous Surname:

SSN:

Gender:

HIC:

DOB:

State of Permanent Residence:
Permanent ZIP Code:
Is Patient waiting in permanent ZIP code:

-

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

Ethnicity/Race:
(select all origins that apply)
Asian
American Indian or Alaska Native

c American Indian
d
e
f
g
g Eskimo
c
d
e
f
c Aleutian
d
e
f
g
c Alaska Indian
d
e
f
g
c American Indian or Alaska Native: Other
d
e
f
g
g American Indian or Alaska Native: Not
c
d
e
f

Specified/Unknown

c Asian Indian/Indian Subd
e
f
g
Continent
c Chinese
d
e
f
g
c Filipino
d
e
f
g
g Japanese
c
d
e
f
c Korean
d
e
f
g
c Vietnamese
d
e
f
g
c Asian: Other
d
e
f
g
g Asian: Not Specified/Unknown
c
d
e
f

Black or African American

c African American
d
e
f
g
c African (Continental)
d
e
f
g

c West Indian
d
e
f
g
g Haitian
c
d
e
f
c Black or African American: Other
d
e
f
g
c Black or African American: Not Specified/Unknown
d
e
f
g

Hispanic/Latino

c Mexican
d
e
f
g
c Puerto Rican (Mainland)
d
e
f
g
g Puerto Rican (Island)
c
d
e
f
c Cuban
d
e
f
g
c Hispanic/Latino: Other
d
e
f
g
c Hispanic/Latino: Not
d
e
f
g
Specified/Unknown

j Male n
k
l
m
n
j Female
k
l
m

Native Hawaiian or Other Pacific Islander

White

c Native Hawaiian
d
e
f
g

c European Descent
d
e
f
g

g Guamanian or Chamorro
c
d
e
f

c Arab or Middle Eastern
d
e
f
g

c Samoan
d
e
f
g
c Native Hawaiian or Other Pacific Islander: Other
d
e
f
g
c Native Hawaiian or Other Pacific Islander: Not
d
e
f
g

Specified/Unknown

g North African (non-Black)
c
d
e
f
c White: Other
d
e
f
g
c White: Not Specified/Unknown
d
e
f
g

j U.S. CITIZEN
k
l
m
n
Citizenship:

j RESIDENT ALIEN
k
l
m
n
j NON-RESIDENT ALIEN, Year Entered US
k
l
m
n

Year of Entry to the U.S.

j NONE
k
l
m
n
j GRADE SCHOOL (0-8)
k
l
m
n
j HIGH SCHOOL (9-12)
k
l
m
n
Highest Education Level:

j ATTENDED COLLEGE/TECHNICAL SCHOOL
k
l
m
n
j ASSOCIATE/BACHELOR DEGREE
k
l
m
n
j POST-COLLEGE GRADUATE DEGREE
k
l
m
n
j N/A (< 5 YRS OLD)
k
l
m
n
j UNKNOWN
k
l
m
n

j IN INTENSIVE CARE UNIT
k
l
m
n
Medical Condition at time of listing:

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, Specify
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

VAD Brand1:
Specify:
VAD Brand2:
Specify:

Functional Status:

j Definite Cognitive delay/impairment (verified by IQ score <70
k
l
m
n
or unambiguous behavioral observation)

j Probable Cognitive delay/impairment (not verified or
k
l
m
n
unambiguous but more likely than not, based on behavioral
observation or other evidence)
Cognitive Development:

j Questionable Cognitive delay/impairment (not judged to be
k
l
m
n
more likely than 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
k
l
m
n
cognitive delay/impairment)

j Not Assessed
k
l
m
n

j Definite Motor delay/impairment (verified by physical exam or
k
l
m
n
unambiguous behavioral observation)

j Probable Motor delay/impairment (not verified or
k
l
m
n
unambiguous but more likely than not, based on behavioral
observation or other evidence)
Motor Development:

j Questionable Motor delay/impairment (not judged to be more
k
l
m
n
likely than 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
Academic Progress:

j Delayed Grade Level
k
l
m
n

j Special Education
k
l
m
n
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
Previous Transplants:
Organ

Date

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].

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

Previous Pancreas Islet Infusion:

Source of Payment:
Primary:
Specify:
Secondary:

Clinical Information: AT LISTING
Date of Measurement:
Height:

ft.

Weight:

lbs

BMI:

in.

kg

kg/m2

%ile ST=
%ile

ABO Blood Group:

Primary Diagnosis:
Specify:

General Medical Factors:

j No
k
l
m
n
Diabetes:

cm %ile ST=

j Type I
k
l
m
n
j Type II
k
l
m
n

j Type Other
k
l
m
n
j Type Unknown
k
l
m
n
j Diabetes Status Unknown
k
l
m
n

j No dialysis
k
l
m
n
j Hemodialysis
k
l
m
n
Dialysis:

j Peritoneal Dialysis
k
l
m
n
j Dialysis Status Unknown
k
l
m
n
j Dialysis-Unknown Type was performed
k
l
m
n

j No
k
l
m
n
Peptic Ulcer:

j Yes, active within the last year
k
l
m
n

j Yes, not active within the last year
k
l
m
n
j Unknown
k
l
m
n

j No angina
k
l
m
n
j Stable angina - strenuous activity results in angina
k
l
m
n
j Stable angina - ordinary physical activity results in angina
k
l
m
n
Angina:

j Stable angina - no rest angina; does have angina with less
k
l
m
n
than ordinary activity

j Stable angina - angina with any physical activity or at rest
k
l
m
n
j Unstable angina
k
l
m
n
j Unknown if angina present
k
l
m
n

Drug Treated Systemic Hypertension:

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

Symptomatic Cerebrovascular Disease:

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

Symptomatic Peripheral Vascular Disease:

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

Drug Treated COPD:

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

Pulmonary Embolism:

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

Any previous Malignancy:

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

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:
Most Recent Serum Creatinine:

mg/dl

ST=

Total Serum Albumin:

g/dl

ST=

Heart Medical Factors
Sudden Death:

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

Antiarrhythmics:

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

Amiodarone:

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

Implantable Defibrillator:

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

Infection Requiring IV Drug Therapy within
2/wks prior to listing:

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

Exercise Oxygen Consumption:

ST=
ml/min/kg

Lung Medical Factors
Pulmonary Status:
FVC:

%predicted

FeV1:

%predicted

pCO2:

mm/Hg

IV Treated Pulmonary Sepsis Episode >= 2 in
last 12 months:

ST=

ST=

ST=

FeV1(L)/FVC(L):

O2 Requirement at Rest:

ST=

L/min

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

ST=

UNK

Corticosteroid Dependency >= 5mg/day:

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

Six minute walk distance:
Pan-Resistant Bacterial Lung Infection:

# of feet

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

Heart/Lung Medical Factors:
Most Recent Hemodynamics:

Inotropes/Vasodilators:
ST=

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

PA (sys) mm/Hg:
ST=

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

PA (dia) mm/Hg:
ST=

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

PA (mean) mm/Hg:
ST=

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

PCW (mean) mm/Hg:
ST=

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

CO L/min:

History of Cigarette Use:

j YES n
k
l
m
n
j NO
k
l
m
j 0-10
k
l
m
n
j 11-20
k
l
m
n
j 21-30
k
l
m
n

If Yes, Check # pack years:

j 31-40
k
l
m
n
j 41-50
k
l
m
n
j >50
k
l
m
n
j Unknown pack years
k
l
m
n
j 0-2 months
k
l
m
n
j 3-12 months
k
l
m
n

j 13-24 months
k
l
m
n
Duration of Abstinence:

j 25-36 months
k
l
m
n
j 37-48 months
k
l
m
n
j 49-60 months
k
l
m
n

j >60 months
k
l
m
n
j Continues To Smoke
k
l
m
n
j Unknown duration
k
l
m
n
Other Tobacco Use:

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

Prior thoracic surgery other than previous
transplant:

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

If yes, number of prior sternotomies:
If yes, number of prior thoracotomies:
Prior congenital cardiac surgery:

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

If yes, palliative surgery:

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

If yes, corrective surgery:

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