See ISHLT Registration Data Elements for technical details for the registration fields.
Click here to view a sample of the 5-page Registration Record.
Note: All of the fields on the Pre-Tx page are optional.
PRE-TRANSPLANT CLINICAL INFORMATION |
Medical Condition: Select the one option that best describes the patient's condition and location prior to the time of transplant.
Patient on Life Support: If the patient is on any type of machine or medication for life support just prior to the time of transplant, select YES. If not, select NO.
If YES, select as many of the types of life support listed on the record that apply to this patient.
Extra Corporeal Membrane Oxygenation
Intra Aortic Balloon Pump
Ventilator - select only if the patient is on continuous invasive ventilation
Prostaglandins
Intravenous Inotropes
Inhaled NO
If Other mechanism is selected, enter the type of life support in the space provided.
Patient on Ventricular Assist Device: If the patient is on a Ventricular Assist Device (VAD), select the type from the drop-down list. If the patient wasn't on a VAD, select NONE.
NONE
LVAD (Left Ventricular Assist Device)
RVAD (Right Ventricular Assist Device)
TAH (Total Artificial Heart)
LVAD+RVAD
If a VAD was indicated, select the brand of device that the candidate was on. If LVAD+RVAD was indicated, select the brand of device the candidate was on for both LVAD and RVAD. If Other, Specify is selected for one of the following, specify the name in the space provided.
LVAD
Abiomed BVS
Arrow Lionheart
Berlin Heart
Biomedicus
Heartmate II
Heartmate IP
Heartmate VE
Heartmate XVE
Heartsaver VAD
Jarvik 2000
Medos
Micromed DeBakey
Novacor PC
Novacor PCq
Pittsburgh AB180
Thoratec
Thoratec IVAD
Toyobo
Other, Specify
RVAD
Abiomed BVS
Berlin Heart
Biomedicus
Medos
Thoratec
Thoratec IVAD
Toyobo
Other, Specify
TAH
AbioCor
Cardiowest
Other, Specify
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Functional Status: Select the choice that best describes the recipient's functional status just prior to the time of transplant.
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Cognitive Development: Select the choice that best describes the recipient's cognitive development at the time of listing.
Definite Cognitive Delay/Impairment (verified by IQ score <70 or unambiguous behavioral observation)
Probable Cognitive Delay/Impairment (not verified or unambiguous but more likely than not, based on behavioral observation or other evidence)
Questionable Cognitive Delay/Impairment (not judged to be more likely than not, but with some indication of cognitive delay/impairment such as expressive/receptive language and/or learning difficulties)
No Cognitive Delay/Impairment (no obvious indicators of cognitive delay/impairment)
Not Assessed
Motor Development: Select the choice that best describes the recipient's motor development at the time of listing.
Definite Motor Delay/Impairment (verified by physical exam or unambiguous behavioral observation)
Probable Motor Delay/Impairment (not verified or unambiguous but more likely than not, based on behavioral observation or other evidence)
Questionable Motor Delay/Impairment (not judged to be more likely than not, but with some indication of motor delay/impairment)
No Motor Delay/Impairment (no obvious indicators of motor delay/impairment)
Not Assessed
Physical Capacity: (Complete for recipients older than 18 years of age.) Select the choice that best describes the recipient's physical capacity just prior to the time of transplant. If the recipient's Medical Condition indicates they are hospitalized, select Not Applicable (hospitalized). (This field is optional for adult recipients only.)
No Limitations
Limited Mobility
Wheelchair bound or more limited
Not Applicable (<1 year="" old="" or="" hospitalized)
Unknown
Working for income: (Complete for patients 19 years of age or older) Indicate whether the patient was working for income just prior to the time of transplant by selecting YES, NO or UNK. This field only displays for patients 19 years of age or older.
If NO, Not Working Due To: If NO is selected, indicate the reason why the patient was not working.
If YES: (check one) If YES is selected, indicate the patient's working status.
Academic Progress: (Complete for patients 18 years of age or younger) Select as appropriate to indicate the patient's academic progress just prior to the time of transplant. This field only displays for patients 18 years of age or younger.
Academic Activity Level: Select as appropriate to indicate the patient's academic activity level just prior to the time of transplant. This field only displays for patients 18 years of age or younger.
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Date of Measurement: Enter the date, using the 8-digit format of MM/DD/YYYY, the recipient’s height and weight were measured.
Height: Provide the height of the patient, in centimeters. For patients 18 years old or younger, the calculated percentiles will display based on the 2000 CDC growth charts.
Weight: Provide the weight of the patient in kilograms. For patients 18 years old or younger, the calculated percentiles will display based on the 2000 CDC growth charts.
BMI (Body Mass Index): For patients 18 years old or younger, calculated percentiles will display based on the 2000 CDC growth charts.
Percentiles are the most commonly used clinical indicator to assess the size and growth patterns of individual children. Percentiles rank the position of an individual by indicating what percent of the reference population the individual would equal or exceed (i.e. on the weight-for-age growth charts, a 5 year-old girl whose weight is at the 25th percentile, weighs the same or more than 25 percent of the reference population of 5-year-old girls, and weighs less than 75 percent of the 5-year-old girls in the reference population). For additional information about CDC growth charts, see http://www.cdc.gov/.
MEDICAL HISTORY |
Primary Diagnosis: The diagnosis selected on the Patient REgistration page will display. If a diagnosis was selected with Other Specify, in the name, specify the diagnosis in the field provided.
Diabetes: Indicate the patient's history of diabetes. If the patient does not have a history of diabetes, select NO. Select Type Other for any type of induced diabetes. Select Type Unknown if the patient has a history of diabetes but the type is unknown. If this information is unknown, select Diabetes Status Unknown.
Type 1 is defined as a disease in which the body does not produce any insulin, most often occurring in children and young adults. People with Type 1 diabetes must take daily insulin injections to stay alive. Type 1 diabetes accounts for 5 to 10 percent of diabetes.
Type 2 is defined as a metabolic disorder resulting from the body's inability to make enough, or properly use, insulin. It is the most common form of the disease. Type 2 Diabetes accounts for 90 to 95 percent of diabetes.
Dialysis: Select Hemodialysis or Peritoneal Dialysis if the patient has a history of dialysis. Select Dialysis - Unknown Type was performed if the patient has a history of dialysis, but the type is not known. If the patient does not have a history of dialysis, select No Dialysis. Select Dialysis Status Unknown if this information is not known.
Peptic Ulcer: Indicate the patient's history of peptic ulcer disease.
Angina: Indicate if the patient has a history of angina and documented coronary artery disease prior the transplant.
Drug Treated Systemic Hypertension: Select YES if the patient is being treated or has a history of being treated with any medication for the purpose of lowering blood pressure. If not, select NO. If unknown, select UNK.
Symptomatic Cerebrovascular Disease: Select YES if the patient is experiencing or has a history of signs and symptoms of transient ischemic attacks or stroke. If not, select NO. If unknown, select UNK.
Symptomatic Peripheral Vascular Disease: Select YES if the patient is experiencing or has a history of intermittent claudication, diminished peripheral pulses or other signs and symptoms of peripheral vascular disease. If not, select NO. If unknown, select UNK.
Drug Treated COPD (Chronic Obstructive Pulmonary Disease): Select YES if the patient is currently or has a history of taking any medication to control signs and symptoms of COPD.If not, select NO. If unknown, select UNK.
Pulmonary Embolism: If the recipient experienced any episode of pulmonary embolism between listing and transplant, select Yes. If not, select No. If unknown, select UNK.
Any previous Malignancy: Indicate whether the patient has had a history of any previous malignant cancer prior to transplant. If the patient has not had a history of any previous malignant cancer prior to the transplant, select NO. If unknown, select Unknown. If yes, select all applicable types. If Other, Specify is selected, indicate the type of tumor in the space provided.
Skin Melanoma
Skin Non-Melanoma
CNS Tumor
Genitourinary
Breast
Thyroid
Tongue/Throat/Larynx
Lung
Leukemia/Lymphoma
Liver
Other, specify
Most Recent Serum Creatinine: Enter the most recent serum creatinine value. If the value is unavailable, select the appropriate status from the ST field.
Most Recent Serum Total Bilirubin: Enter the most recent serum total bilirubin value. If the value is unavailable, select the appropriate status from the ST field.
Total Serum Albumin: Enter the total serum albumin value in mg/dl. If the value is unavailable, select the appropriate status from the ST field.
PRA (%) - Most Recent Class I: Enter the Class I PRA (%) value obtained from the most recent serum.
PRA (%) - Most Recent Class II: Enter the Class II PRA (%) value obtained from the most recent serum.
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Sudden Death: Select YES
if the patient has experienced any episodes of sudden death (cardiac arrest
with resuscitation) prior to the time of transplant. If not, select NO. If unknown, select UNK.
Antiarrythmics: Select YES
if the patient is taking or has a history of taking any medication other
than Amiodarone for the purpose of controlling any diagnosed arrhythmia.
If not, select NO. If unknown,
select UNK.
Amiodarone: Select YES if the patient was taking or has a history of taking Amiodarone prior to the time of transplant. If not, select NO. If unknown, select UNK.
Implantable Defibrillator: Select YES if the patient had an implantable defibrillator.If not, select NO. If unknown, select UNK.
Infection Requiring IV Drug Therapy within 2/wks prior to listing: Select YES if the patient had an infection that required an IV Drug Therapy within 2 weeks prior to listing. If not, select NO. If this information is unknown, select UNK.
Exercise Oxygen Consumption: Enter the patient's oxygen consumption at exercise in ml/min/kg. If the value is unavailable, select the appropriate status from the ST field.
FVC: Enter the patient's FVC in %predicted.
FeV1: Enter the patient's FeV1 in %predicted.
pCO2: Enter the patient's pCO2 in mm/Hg.
FeV1(L)/FVC(L): Enter the patient's FeV1(L)/FVC(L).
Oxygen Requirement at Rest (Lung and Heart/Lung Only): Enter the recipient's oxygen requirement at rest, prior to transplantation, in L/min. If the recipient does not require oxygen at rest, enter 0. If the value is not available, select the appropriate status from the ST field (N/A, Not Done, Missing, Unknown).
IV Treated
Pulmonary Sepsis Episodes>=2 in last 12 months:
Select YES if the patient has
experienced two or more episodes of pulmonary sepsis requiring treatment
with IV antibiotics within the past 12 months. If not, select NO.
If unknown, select UNK.
Corticosteroid
Dependency>= 5mg/day:
Select YES if the patient is taking
5 or more milligrams of any oral corticosteroid.If not, select NO.
If unknown, select UNK.
Six minute
walk distance: Enter the
number of feet the patient can walk in six minutes.
Pan-Resistant Bacterial Lung Infection: Select YES if the patient has a history of pan-resistant bacterial lung infection prior to listing. If not, select NO. If unknown, select UNK.
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Most recent Hemodynamics: Enter the most recent hemodynamic values for systolic (PA (sys)), diastolic (PA (dia)) and mean pulmonary artery pressure (PA (mean)); mean pulmonary capillary wedge pressure (PCW (mean)) and cardiac output (CO). For each measure, indicate if the measurement was obtained while the patient was on Inotropes or Vasodilators. If not, select NO.
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History of Cigarette Use: Select YES if the patient has a history of cigarette use. If not, select NO. If YES is selected, indicate the number of pack years. Then indicate the Duration of Abstinence from the list provided.
Pack Years is the number of packs of cigarettes the patient smoked per day multiplied by the number of years. For example a patient smoking 2 packs of cigarettes per day for 10 years would equal 20 pack years.
Other Tobacco Use: Indicate whether the patient has a history of other tobacco use by selecting YES, NO or UNK.
Prior Cardiac Surgery (non-transplant): If the patient had cardiac surgery prior to listing select Yes. If no prior thoracic surgery, select No. If Yes is selected, select all type(s) of surgery. If the type of cardiac surgery is not listed, select Other, Specify and enter the type of cardiac surgery in the space provided.
CABG
Valve Replacement/Repair
Congenital
Left Ventricular Remodeling
Other, specify
Prior Lung Surgery (non-transplant): If the patient had lung surgery prior to listing select Yes. If no prior lung surgery, select No. If Yes is selected, select all type(s) of surgery. If the type of lung surgery is not listed, select Other, Specify and enter the type of lung surgery in the space provided.
Pneumoreduction
Pneumothorax Surgery-Nodule
Pneumothorax Decortication
Lobectomy
Pneumonectomy
Left Thoracotomy
Right Thoracotomy
Other, specify
[PEDIATRIC PATIENTS]
Prior Thoracic Surgery Other Than Prior Transplant: If the patient had thoracic surgery prior to listing, select Yes. If no prior thoracic surgery, select No. If Yes is selected, select all type(s) of surgery. If the type of thoracic surgery is not listed, select Other, specify and enter the type of thoracic surgery in the space provided.
If yes, number of prior sternotomies
If yes, number of prior thoracotomies
Prior Congenital Cardiac Surgery: If the patient had prior surgery, select Yes. If not, select No. If unknown, select UNK.
If Yes, palliative surgery: If the surgery was palliative, select Yes. If not, select No. If unknown, select UNK.
If Yes, corrective surgery: If the surgery was corrective, select Yes. If not, select No. If unknown, select UNK.
If Yes, single ventricular physiology: If the surgery was to correct single ventricular physiology, select Yes. If not, select No. If unknown, select UNK.
RECIPIENT HLA TYPING
Typing Method Class I and Typing Method Class II: Select whether the typing method for Class I and Class II antigens was Serology and/or DNA. then select the patient's antigens for the A, B and DR loci.
Select the antigen from the list. When known, it is preferable to enter the split of an antigen rather than the parent. If the second antigen at a locus is blank, select No second antigen detected. Only select Not tested when the locus is not tested.