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UNOS_Employees
PATIENT REGISTRATION
PRE-TX
TRANSPLANT
DONOR
DISCHARGE
PRE-TRANSPLANT CLINICAL INFORMATION
Medical Condition
IN INTENSIVE CARE UNIT
HOSPITALIZED NOT IN ICU
NOT HOSPITALIZED
Patient on Life Support:
YES
NO
Extra Corporeal Membrane Oxygenation
Intra Aortic Balloon Pump
Ventilator
Prostaglandins
Prostacyclin Infusion
Prostacyclin Inhalation
Intravenous Inotropes
Inhaled NO
Other mechanism
Specify:
Patient on Ventricular Assist Device:
NONE
LVAD
RVAD
TAH
LVAD+RVAD
VAD Brand 1:
Specify:
Life Support: VAD Brand2
Specify:
Date of VAD implantation:
Functional Status:
100% - Normal, no complaints, no evidence of disease
90% - Able to carry on normal activity: minor symptoms of disease
80% - Normal activity with effort: some symptoms of disease
70% - Cares for self: unable to carry on normal activity or active work
60% - Requires occasional assistance but is able to care for needs
50% - Requires considerable assistance and frequent medical care
40% - Disabled: requires special care and assistance
30% - Severely disabled: hospitalization is indicated, death not imminent
20% - Very sick, hospitalization necessary: active treatment necessary
10% - Moribund, fatal processes progressing rapidly
Physical Capacity:
No Limitations
Limited Mobility
Wheelchair bound or more limited
Not Applicable (< 1 year old or hospitalized)
Unknown
Working for income:
YES
NO
UNK
If No, Not Working Due To:
Disability
Demands of Treatment
Insurance Conflict
Inability to Find Work
Patient Choice - Homemaker
Patient Choice - Student Full Time/Part Time
Patient Choice - Retired
Patient Choice - Other
Not Applicable - Hospitalized
Unknown
If Yes:
Working Full Time
Working Part Time due to Demands of Treatment
Working Part Time due to Disability
Working Part Time due to Insurance Conflict
Working Part Time due to Inability to Find Full Time Work
Working Part Time due to Patient Choice
Working Part Time Reason Unknown
Working, Part Time vs. Full Time Unknown
Academic Progress:
Within One Grade Level of Peers
Delayed Grade Level
Special Education
Not Applicable < 5 years old/ High School graduate or GED
Status Unknown
Academic Activity Level:
Full academic load
Reduced academic load
Unable to participate in academics due to disease or condition
Not Applicable < 5 years old/ High School graduate or GED
Status Unknown
Cognitive Development:
Definite Cognitive delay/impairment
Probable Cognitive delay/impairment
Questionable Cognitive delay/impairment
No Cognitive delay/impairment
Not Assessed
Motor Development:
Definite Motor delay/impairment
Probable Motor delay/impairment
Questionable Motor delay/impairment
No Motor delay/impairment
Not Assessed
Date of Measurement:
Height:
cm
Weight
kg
BMI:
MEDICAL HISTORY
Primary Diagnosis:
ABCA3 TRANSPORTER MUTATION
ALLERGIC BRONCHOPULMONARY ASPERGILLOSIS
ALPHA - 1 - ANTITRYPSIN DEFICIENCY
ALVEOLAR PROTEINOSIS
AMYLOIDOSIS
ARDS/PNEUMONIA
ARRHYTHMOGENIC RIGHT VENTRICULAR DYSPLASIA/CARDIOMYOPATHY
BRONCHIECTASIS
BRONCHIOLOALVEOLAR CARCINOMA (BAC)
BRONCHOPULMONARY DYSPLASIA
CANCER
CARCINOID TUMORLETS
CHRONIC PNEUMONITIS OF INFANCY
COMMON VARIABLE IMMUNE DEFICIENCY
CONGENITAL HEART DEFECT - PRIOR SURGERY UNKNOWN
CONGENITAL HEART DEFECT - WITH SURGERY
CONGENITAL HEART DEFECT - WITHOUT SURGERY
CONGENITAL MALFORMATION
CONSTRICTIVE BRONCHIOLITIS
COPD/EMPHYSEMA
CORONARY ARTERY DISEASE
CREST - PULMONARY HYPERTENSION
CREST - RESTRICTIVE
CYSTIC FIBROSIS
DILATED MYOPATHY: ADRIAMYCIN
DILATED MYOPATHY: ALCOHOLIC
DILATED MYOPATHY: FAMILIAL
DILATED MYOPATHY: IDIOPATHIC
DILATED MYOPATHY: ISCHEMIC
DILATED MYOPATHY: MYOCARDITIS
DILATED MYOPATHY: OTHER SPECIFY
DILATED MYOPATHY: POST PARTUM
DILATED MYOPATHY: VIRAL
EHLERS-DANLOS SYNDROME
EISENMENGER'S SYN: ATRIAL SEPTAL DEFECT
EISENMENGER'S SYN: MULTI CONGENITAL ANOMALIES
EISENMENGER'S SYN: OTHER SPECIFY
EISENMENGER'S SYN: PDA
EISENMENGER'S SYN: VSD
EOSINOPHILIC GRANULOMA
FIBROCAVITARY LUNG DISEASE
FIBROSING MEDIASTINITIS
GRAFT-VS-HOST DISEASE (GVHD)
GRANULOMATOUS LUNG DISEASE
HEART RE-TX/GF: ACUTE REJECTION
HEART RE-TX/GF: CHRONIC REJECTION
HEART RE-TX/GF: CORONARY ARTERY DISEASE
HEART RE-TX/GF: HYPERACUTE REJECTION
HEART RE-TX/GF: NON-SPECIFIC
HEART RE-TX/GF: OTHER SPECIFY
HEART RE-TX/GF: PRIMARY FAILURE
HEART RE-TX/GF: RESTRICTIVE/CONSTRICTIVE
HEART/LUNG RE-TX/GF: PRIMARY FAILURE
HERMANSKY PUDLAK SYNDROME
HYPERSENSITIVITY PNEUMONITIS
HYPERTROPHIC CARDIOMYOPATHY
HYPOGAMMAGLOBULINEMIA
IDIOPATHIC PULMONARY HEMOSIDEROSIS
IIP: ACUTE INTERSTITIAL PNEUMONIA
IIP: BOOP/COP
IIP: DESQUAMATIVE INTERSTITIAL PNEUMONIA
IIP: IDIOPATHIC PULMONARY FIBROSIS (IPF)
IIP: LYMPHOCYTIC INTERSTITIAL PNEUMONIA (LIP)
IIP: NONSPECIFIC INTERSTITIAL PNEUMONIA
IIP: RESPIRATORY BRONCHIOLITIS
INHALATION BURNS/TRAUMA
KARTAGENER'S SYNDROME
LUNG RE-TX/GF: ACUTE REJECTION
LUNG RE-TX/GF: NON-SPECIFIC
LUNG RE-TX/GF: OBLITERATIVE BRONCHIOLITIS-OBSTRUCTIVE
LUNG RE-TX/GF: OBLITERATIVE BRONCHIOLITIS-RESTRICTIVE
LUNG RE-TX/GF: OBSTRUCTIVE
LUNG RE-TX/GF: OTHER SPECIFY
LUNG RE-TX/GF: PRIMARY GRAFT FAILURE
LUNG RE-TX/GF: RESTRICTIVE
LUPUS
LYMPHANGIOLEIOMYOMATOSIS
MIXED CONNECTIVE TISSUE DISEASE
MUSCULAR DYSTROPHY: OTHER SPECIFY
OBLITERATIVE BRONCHIOLITIS (NON-RETRANSPLANT)
OBSTRUCTIVE LUNG DISEASE
OCCUPATIONAL LUNG DISEASE OTHER SPECIFY
OTHER - SPECIFY
PARANEOPLASTIC PEMPHIGUS ASSOCIATED CASTLEMAN'S DISEASE
POLYMYOSITIS
PORTOPULMONARY HYPERTENSION
PRIMARY CILIARY DYSKINESIA
PULMONARY CAPILLARY HEMANGIOMATOSIS
PULMONARY FIBROSIS OTHER SPECIFY CAUSE
PULMONARY HYALINIZING GRANULOMA
PULMONARY HYPERTENSION/PULMONARY ARTERIAL HYPERTENSION
PULMONARY LYMPHANGIECTASIA (PL)
PULMONARY TELANGIECTASIA - PULMONARY HYPERTENSION
PULMONARY TELANGIECTASIA - RESTRICTIVE
PULMONARY THROMBOEMBOLIC DISEASE
PULMONARY VASCULAR DISEASE
PULMONARY VENO-OCCLUSIVE DISEASE
PULMONIC STENOSIS
RESTRICTIVE MYOPATHY: AMYLOIDOSIS
RESTRICTIVE MYOPATHY: ENDOCARDIAL FIBROS
RESTRICTIVE MYOPATHY: IDIOPATHIC
RESTRICTIVE MYOPATHY: OTHER SPECIFY
RESTRICTIVE MYOPATHY: SARCOIDOSIS
RESTRICTIVE MYOPATHY: SEC TO RADIAT/CHEM
RHEUMATOID DISEASE
RIGHT HYPOPLASTIC LUNG
SARCOIDOSIS
SCLERODERMA - PULMONARY HYPERTENSION
SCLERODERMA - RESTRICTIVE
SECONDARY PULMONARY FIBROSIS (SPECIFY CAUSE)
SECONDARY PULMONARY HYPERTENSION
SHWACHMAN-DIAMOND SYNDROME
SILICOSIS
SJOGREN'S SYNDROME
SURFACTANT PROTEIN B DEFICIENCY
SURFACTANT PROTEIN C DEFICIENCY
TERATOMA
THROMBOEMBOLIC PULMONARY HYPERTENSION
TUBEROUS SCLEROSIS
VALVULAR HEART DISEASE
WEGENER'S GRANULOMA - BRONCHIECTASIS
WEGENER'S GRANULOMA - RESTRICTIVE
DILATED MYOPATHY: ISCHEMIC
Specify:
Diabetes:
No
Type I
Type II
Type Other
Type Unknown
Diabetes Status Unknown
Dialysis:
No dialysis
Hemodialysis
Peritoneal Dialysis
Dialysis Status Unknown
Dialysis-Unknown Type was performed
Peptic Ulcer:
No
Yes, active within the last year
Yes, not active within the last year
Unknown
Angina:
No angina
Stable angina - strenuous activity results in angina
Stable angina - ordinary physical activity results in angina
Stable angina - no rest angina; does have angina with less than ordinary activity
Stable angina - angina with any physical activity or at rest
Unstable angina
Unknown if angina present
Angina:
No
Yes, and documented Coronary Artery Disease
Yes, with no documented Coronary Artery Disease
Yes, but Coronary Artery Disease unknown
Status Unknown
Drug Treated Systemic Hypertension:
YES
NO
UNK
Symptomatic Cerebrovascular Disease:
YES
NO
UNK
Symptomatic Peripheral Vascular Disease:
YES
NO
UNK
Drug Treated COPD:
YES
NO
UNK
Pulmonary Embolism:
YES
NO
UNK
Any previous Malignancy:
YES
NO
UNK
Specify Type:
Skin Melanoma
Skin Non-Melanoma
CNS Tumor
Genitourinary
Breast
Thyroid
Tongue/Throat/Larynx
Lung
Leukemia/Lymphoma
Liver
Other, specify
Specify:
Most Recent Serum Creatinine:
mg/dl
ST=
Missing
Unknown
N/A
Not Done
Most Recent Serum Total Bilirubin:
mg/dl
ST=
Missing
Unknown
N/A
Not Done
Total Serum Albumin:
g/dl
ST=
Missing
Unknown
N/A
Not Done
PRA (%) - Most Recent Class I:
PRA (%) - Most Recent Class II:
Sudden Death:
YES
NO
UNK
Antiarrhythmics:
YES
NO
UNK
Amiodarone:
YES
NO
UNK
Implantable Defibrillator:
YES
NO
UNK
Infection Requiring IV Drug Therapy within 2/wks prior to listing:
YES
NO
UNK
Exercise Oxygen Consumption:
ml/min/kg
ST=
Missing
Unknown
N/A
Not Done
FVC:
%predicted:
FeV1:
%predicted:
pCO2:
mm/Hg:
FeV1(L)/FVC(L):
O2 Requirement at Rest:
L/min
IV Treated Pulmonary Sepsis Episode >= 2 in last 12 months:
YES
NO
UNK
Corticosteroid Dependency >= 5mg/day:
YES
NO
UNK
Six minute walk distance:
# of feet
Pan-Resistant Bacterial Lung Infection:
YES
NO
UNK
Most Recent Hemodynamics
Inotropes/Vasodilators
PA (sys)mm/Hg:
YES
NO
PA(dia) mm/Hg:
YES
NO
PA(mean) mm/Hg:
YES
NO
PCW(mean) mm/Hg:
YES
NO
CO L/min:
YES
NO
History of Cigarette Use:
YES
NO
If Yes, Check # pack years:
Duration of Abstinence:
0-2 months
3-12 months
13-24 months
25-36 months
37-48 months
49-60 months
>60 months
Continues To Smoke
Unknown duration
Other Tobacco Use:
YES
NO
UNK
Prior Cardiac Surgery (non-transplant):
YES
NO
UNK
If yes, check all that apply:
CABG
Valve Replacement/Repair
Congenital
Left Ventricular Remodeling
Other, specify
:
Specify:
Prior Lung Surgery (non-transplant):
YES
NO
UNK
If yes, check all that apply:
Pneumoreduction
Pneumothorax Surgery-Nodule
Pneumothorax Decortication
Lobectomy
Pneumonectomy
Left Thoracotomy
Right Thoracotomy
Other, specify
Specify:
Prior Thoracic Surgery other than prior transplant:
YES
NO
UNK
If yes, number of prior sternotomies:
Unknown if there were prior sternotomies
0
1
2
3
4
5+
Unknown number of prior sternotomies
If yes, number of prior thoracotomies:
Unknown if there were prior thoracotomies
0
1
2
3
4
5+
Unknown number of prior thoracotomies
Prior congenital cardiac surgery:
YES
NO
UNK
If yes, palliative surgery:
YES
NO
UNK
If yes, corrective surgery:
YES
NO
UNK
If yes, single ventricular physiology:
YES
NO
UNK
RECIPIENT HLA TYPING
Typing Method Class I:
Serology
DNA
A:
1
2
0201
0202
0203
0205
0206
3
9
10
11
1101
1102
19
23
24
2402
2403
25
26
28
29
2901
2902
30
3001
3002
31
32
33
3301
3303
34
3401
3402
36
43
66
6601
6602
68
6801
6802
69
74
80
No second antigen detected
Not Tested
A:
1
2
0201
0202
0203
0205
0206
3
9
10
11
1101
1102
19
23
24
2402
2403
25
26
28
29
2901
2902
30
3001
3002
31
32
33
3301
3303
34
3401
3402
36
43
66
6601
6602
68
6801
6802
69
74
80
No second antigen detected
Not Tested
B:
5
7
0702
8
0801
0802
0803
0804
12
13
1301
1302
14
1401
1402
15
1501
1502
1503
1510
1511
1512
1513
1516
1517
16
17
18
21
22
27
2705
2708
35
37
38
39
3901
3902
3905
3913
40
4001
4002
4005
4006
41
42
44
4402
4403
4415
45
46
47
48
49
50
51
5101
5102
52
53
54
55
56
57
5701
5703
58
59
60
61
62
63
64
65
67
70
71
72
73
75
76
77
78
81
82
No second antigen detected
Not Tested
B:
5
7
0702
8
0801
0802
0803
0804
12
13
1301
1302
14
1401
1402
15
1501
1502
1503
1510
1511
1512
1513
1516
1517
16
17
18
21
22
27
2705
2708
35
37
38
39
3901
3902
3905
3913
40
4001
4002
4005
4006
41
42
44
4402
4403
4415
45
46
47
48
49
50
51
5101
5102
52
53
54
55
56
57
5701
5703
58
59
60
61
62
63
64
65
67
70
71
72
73
75
76
77
78
81
82
No second antigen detected
Not Tested
Typing Method Class II:
Serology
DNA
DR:
1
0101
0102
103
2
3
0301
0302
4
0401
0402
0403
0404
0405
0407
5
6
7
8
9
0901
0902
10
11
1101
1104
12
1201
1202
13
1301
1303
14
1401
1402
1403
1404
1454
15
1501
1502
1503
16
1601
1602
17
18
No second antigen detected
Not Tested
DR:
1
0101
0102
103
2
3
0301
0302
4
0401
0402
0403
0404
0405
0407
5
6
7
8
9
0901
0902
10
11
1101
1104
12
1201
1202
13
1301
1303
14
1401
1402
1403
1404
1454
15
1501
1502
1503
16
1601
1602
17
18
No second antigen detected
Not Tested
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