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DEMOGRAPHICS
CLINICAL ENROLLMENT
ENROLLMENT TESTING
VIEW FOLLOW-UPS / HOSPITALIZATIONS
Identifier:
Center:
1 Year Annual Follow Up
Note: If the patient has been transplanted or had a mechanical support device implanted during the follow-up period, please report the patient’s status and values just prior to the transplant or implant.
FOLLOW UP INFORMATION
Patient Status at Time of Follow-Up:
*
Living
Dead
Lost to Followup
Please Complete the Death Form
Date: Last Seen or Death:
*
mm/dd/yyyy
Date of Death:
*
mm/dd/yyyy
Location of Death:
*
In Hospital
Out of Hospital
Unknown
Primary Cause of Death:
*
Cancer
Circulatory: Arrhythmia
Circulatory: Congestive Heart Failure
Circulatory: Endstage Cardiomyopathy
Circulatory: Other
Circulatory: Sudden Unexplained Death
Circulatoryulatory: Right Heart Failure
Fluid/Electrolyte Disorder
Hepatic Dysfunction
Major Bleeding
Major Infection
Multisystem Heart Failure
Neurologic Disorder, Specify
Neurologic Event
Other, Specify
Renal Dysfunction
Respiratory: Pulmonary Embolism
Respiratory: Pulmonary, Other
Respiratory: Respiratory Failure
Suicide
Trauma/Accident, Specify
Unknown
Withdrawal of Support, Specify
Specify:
*
Secondary Cause of Death:
Cancer
Circulatory: Arrhythmia
Circulatory: Congestive Heart Failure
Circulatory: Endstage Cardiomyopathy
Circulatory: Other
Circulatory: Sudden Unexplained Death
Circulatoryulatory: Right Heart Failure
Fluid/Electrolyte Disorder
Hepatic Dysfunction
Major Bleeding
Major Infection
Multisystem Heart Failure
Neurologic Disorder, Specify
Neurologic Event
Other, Specify
Renal Dysfunction
Respiratory: Pulmonary Embolism
Respiratory: Pulmonary, Other
Respiratory: Respiratory Failure
Suicide
Trauma/Accident, Specify
Unknown
Withdrawal of Support, Specify
Neuro Disorder Specify:
Specify:
Trauma/Accident Specify:
Withdrawal Specify:
Autopsy:
*
Yes
No
Unknown
PATIENT HISTORY
In The Last Year, Has Patient Care Been Transferred To A Different Medical Center:
*
Yes
No
Unknown
Date of Transfer:
*
mm/dd/yyyy
In The Last Year, Has Patient Been Listed for Transplant:
*
Yes
No
Unknown
Date Listed:
mm/dd/yyyy
Listing Reported to PHTS:
*
Yes
No
Unknown
PHTS Unique Identifier:
Ross/NYHA Class:
*
Class I
Class II
Class III
Class IV
Unknown
Ross/NYHA Classifications
ISHLT/AHA Disease Staging:
*
A
B
C
D
In The Past Year Was The Patient Transplanted:
*
Yes
No
Unknown
Date of Transplant:
mm/dd/yyyy
Transplant Reported to PHTS:
*
Yes
No
Unknown
PHTS Unique Identifier:
Transplant Reported to the ISHLT Transplant Registry:
*
Yes
No
Unknown
ISHLT Transplant Registry Unique Identifier:
Has The Patient Been Hospitalized Since The Last Patient Status Date/Report:
*
Yes
No
Unknown
Please Complete a Hospitalization Form
Date of Admission:
*
mm/dd/yyyy
Date of Discharge (discharge, transplant, death, MCSD):
*
mm/dd/yyyy
Primary Reason for Hospitalization:
*
Arrhythmia (specify)
Arterial Non-CNS Thromboembolic Event
Cardiac Arrest
Elective Procedure - Cardiac Diagnosis
Elective Procedure - Cardiac Therapeutic
Elective Procedure - Non-Cardiac
Electrolyte Disturbance
Feeding/Nutrition Issues (eg. vomiting, poor weight gain)
Fever Treated With Antibiotics Without Known Cause
GI Disorder (other than bleeding)
Heart Failure for Medical Treatment
Major Bleeding
Major Infection
Myocardial Infarction
Neurologic Event, Ischemic
Other - Cardiac
Other - Non-Cardiac
Pulmonary Condition
Renal Failure/Kidney Injury
Syncope
Transplant
Trauma/Accident
VAD Implant
Venous Thromboembolic Disease (DVT/PE)
Specify:
*
Contributing Causes:
Arrhythmia (specify)
Arterial Non-CNS Thromboembolic Event
Cardiac Arrest
Elective Procedure - Cardiac Diagnosis
Elective Procedure - Cardiac Therapeutic
Elective Procedure - Non-Cardiac
Electrolyte Disturbance
Feeding/Nutrition Issues (eg. vomiting, poor weight gain)
Fever Treated With Antibiotics Without Known Cause
GI Disorder (other than bleeding)
Heart Failure for Medical Treatment
Major Bleeding
Major Infection
Myocardial Infarction
Neurologic Event, Ischemic
Other - Cardiac
Other - Non-Cardiac
Pulmonary Condition
Renal Failure/Kidney Injury
Syncope
Transplant
Trauma/Accident
VAD Implant
Venous Thromboembolic Disease (DVT/PE)
Arrhythmia Specify:
Specify:
Rehospitalization Intervention:
*
Atrial Arrhythmia Ablation
Blood Transfusion
Cardioversion
CPR
Dialysis
Enteral Feeding Tube (NG, G, GJ)
IABP
ICD
Inotropes
IV Antibiotics
Left Heart Cath
MCSD: BiVAD
MCSD: Durable LVAD
MCSD: RVAD
MCSD: TAH
MCSD: Temporary Percutaneous LVAD
None
Other, Specify
Pacemaker Without ICD
Right Heart Cath
Unknown
Ventilation: Continuous Mechanical
Ventilation: Non-Invasive
Ventricular Arrhythmia Ablation
Specify:
*
Did Patient Require ECMO Support:
*
Yes
No
ECMO Date:
*
mm/dd/yyyy
ECMO Outcome:
*
Continued ECMO Support
Death
Transition to VAD
Weaned Off
ECMO Date of Outcome:
*
mm/dd/yyyy
Did Patient Receive a MCSD:
*
Yes
No
Date:
*
mm/dd/yyyy
Type:
*
BIVAD
LVAD
RVAD
TAH
Intended Support Strategy (check all that apply):
*
Bridge to Candidacy
Bridge to Recovery
Bridge to Transplant
Destination Therapy
Other, specify
Specify:
*
Reported to VAD registry:
*
Yes
No
Unknown
VAD Registry:
*
PediMACS
IMACS
INTERMACS
EUROMACS
OTHER
Specify:
VAD Registry Unique Identifier:
Hospice/Palliative Care Program Involved/Began:
Yes
No
Unknown
PATIENT STATUS
Patient Status Date:
*
mm/dd/yyyy
Functional Status:
*
100% - Fully active, normal
90% - Minor restrictions in physically strenuous activity
80% - Active, but tires more quickly
70% - Both greater restriction of and less time spent in play activity
60% - Up and around, but minimal active play; keeps busy with quieter with activities
50% - Can dress but lies around much of the day; no active play, can take part in quiet/play activities
40% - Mostly in bed; participates in quiet activities
30% - In bed; needs assistance even for quiet play
20% - Often sleeping; play entirely limited to very passive activities
10% - No play; does not get out of bed
Not Applicable (patient <1 year old)
Not Applicable (patient < 5 years old)
Unknown
Mobility (age appropriate):
*
Able to Ambulate
Ambulate with Assistance (walker, cane)
Not Applicable < 5 Years Old
Requires Wheelchair but not Dependent
Wheelchair Dependent
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
CLINICAL INFORMATION
Date of Measurement:
*
mm/dd/yyyy
Height:
*
cm
ST=
Not Done
Not Recorded
Weight:
*
kg
ST=
Not Done
Not Recorded
BMI:
HEMODYNAMICS
Systolic BP:
mmHg
Diastolic BP:
mmHg
Heart Rate:
bpm
ECHO
Ejection Fraction:
*
%
ST=
Not Done
Not Recorded
LVEDD:
*
cm
ST=
Not Done
Not Recorded
MAPSE:
cm
ST=
Not Done
Not Recorded
TAPSE:
cm
ST=
Not Done
Not Recorded
TR Velocity:
m/s
ST=
Not Done
Not Recorded
RVSP (with estimated CVP):
mmHg
ST=
Not Done
Not Recorded
Estimated Pulmonary Artery Systolic Pressure:
mmHg
ST=
Not Done
Not Recorded
Systemic Ventricle E:E':
Ratio
MEDICAL HISTORY
Experienced Recovery (EF>40%):
*
Yes
No
Become Dependent on Continuous Inotropes:
*
Yes
No
Which Inotropes (check all that apply):
*
Dobutamine
Dopamine
Milrinone
Epinephrine
Other
Unknown
Specify:
*
Resuscitated Since Last Followup:
*
Yes
No
Co-morbidities (check all that apply):
*
BMI < 17 (malnutrition/cachexia)
BMI > 30 (obesity)
Diabetes
CV: Pulmonary Embolism
CV: Other, Specify
Genetic Syndrome, Specify
History of Bone Marrow/Stem Cell Transplant
History of Hepatitis B
History of Hepatitis C
History of HIV
History of Leukemia/Lymphoma
History of Solid Organ Cancer
Liver Dysfunction
Mediastinal Irradiation
Metabolic Syndrome, Specify
Neuromuscular Disease, Specify
Other Cerebrovascular Disease
Protein Losing Enteropathy
Psyche: Major Psychiatric Diagnosis
Pulmonary: Plastic Bronchitis
Pulmonary: Tracheostomy
Pulmonary Disease (specify)
Renal dysfunction (eGFR <60 ml/min/1.73m2)
Rheumatologic Condition, Specify
Stroke, Hemorraghic
Stroke, Ischemic
Vascular: Chronic Coagulopathy
Vascular: HIT
Vascular: Peripheral Vascular Disease
Other, Specify
None
CV Specify:
*
Genetic Syndrome Specify:
*
Metabolic Syndrome Specify:
*
Neuromuscular Disease Specify:
*
Cerebrovascularular Disease Specify:
*
Pulmonary Disease Specify:
*
Rheumatologic Condition Specify:
*
Specify:
*
LABORATORY
Report values closest to the time of presentation
Creatinine:
*
mg/dL
ST=
Not Done
Not Recorded
Total Bilirubin:
mg/dL
Total Serum Albumin:
g/dL
Sodium:
mEq/L
Potassium:
mEq/L
Blood Urea Nitrogen:
mg/dL
ALT:
U/I
AST:
IU/I
BNP:
*
ng/L
ST=
Not Done
Not Recorded
nt-pro BNP:
*
ng/L
ST=
Not Done
Not Recorded
WBC:
*10
^
3/microl
Hemoglobin:
*
g/dL
ST=
Not Done
Not Recorded
Platelets:
*10
^
3/microl
INR (if not anticoagulated):
Ratio
Lymphocyte:
*10
^
3/microl
EXERCISE FUNCTION
Exercise Test:
*
Yes
No
Peak Oxygen Uptake V0
2
:
*
mL/kg/min
ST=
Not Done
Not Recorded
Resting HR:
*
bpm
ST=
Not Done
Not Recorded
Peak HR:
*
bpm
ST=
Not Done
Not Recorded
Peak Oxygen Uptake %pred:
*
%
ST=
Not Done
Not Recorded
Peak RER (R value at peak):
*
Ratio
ST=
Not Done
Not Recorded
Six Minute Walk:
*
Yes
No
Six Minute Walk Distance:
*
feet
ST=
Not Done
Not Recorded
TESTING
Endomyocardial Biopsy:
*
Yes
No
Unknown
MEDICATIONS
ACEI:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Captopril
Enalapril
Fosinopril
Lisinopril
Perindopril
Ramipril
Other, Specify
Specify:
*
Beta Blocker:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Atenolol
Bisoprolol
Carvedilol
Metoprolol
Nadolol
Propranolol
Other, Specify
Specify:
*
Aldosterone Antagonist:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Eplerenone
Spironolactone
Other, Specify
Specify:
*
Antiarrhythmic:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Amiodarone
Flecainide
Ivabradine
Procainamide
Sotalol
Other, Specify
Specify:
*
Calcium Channel Blockers:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Amlodipine
Diltiazem
Israpidine
Nifedipine
Verapamil
Other, Specify
Specify:
*
Phosphodiesterase Inhibitors:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Sildenafil
Tadalafil
Other, Specify
Specify:
*
Angiotensin Receptor Blocker Drug:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Medications (check all that apply):
*
Candesartan
Losartan
Valsartan
Other, Specify
Specify:
*
Digoxin:
*
Currently Using
Currently Not Using: Known Previous Use
Currently Not Using: Intolerant
Currently Not Using: No Known Previous Use
Current Use Unknown
Anticoagulants (check all that apply):
*
Argatroban
Aspirin (ASA)
Bivalirudin
Clopidogrel
Dipyridamole
Fondaparinux
Heparin Low Molecular Weight
Heparin Standard
Lepirudin
Ticlopidine
Warfarin
Ximetagatran
Other, Specify
None
Specify:
*
Diuretics:
*
Yes
No
Unknown
Method of Administration:
*
Enteral
IV Bolus
IV Continuous
Medications (check all that apply):
*
Bumetanide
Ethacrynic Acid
Furosemide
Metolazone
Thiazide
Torsemide
Other, Specify
Specify:
*
Other Medications:
*
Yes
No
Unknown
Medications (check all that apply):
*
Ivabradine
Entresto (LCZ696)
Serelaxin
Levosimendan
Other, Specify
Specify:
*
Nutrition:
*
Fully Orally Fed
NG/J Tube - Partial
NG/J Tube - Fall
G/GJ Tube - Partial
G/GJ Tube - Full
TPN - Partial
TPN - Full
ISHLT PEDIATRIC HEART FAILURE REGISTRY
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