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DEMOGRAPHICS
CLINICAL ENROLLMENT
ENROLLMENT TESTING
Identifier:
Center:
NOTE:
If the patient is hospitalized at enrollment, use the "Add Hospitalization" button to generate a hospitalization event. The data on the hospitalization form can be saved using the "Update" button until the patient is discharged. Then the discharge date can be reported, and the hospitalization form can be submitted.
ECHO
Echo Test:
*
Yes
No
Date of Test:
*
mm/dd/yyyy
LVEF:
*
%
ST=
Not Done
Not Recorded
LVEDD:
*
cm
ST=
Not Done
Not Recorded
MR:
*
None
Mild
Moderate
Severe
Not Recorded/Not Documented
AR:
*
None
Mild
Moderate
Severe
Not Recorded/Not Documented
Qualitative RV Function:
*
Normal
Mildly Decreased
Moderately Decreased
Severely Decreased
Not Recorded/Not Documented
Qualitative RV Size:
*
Normal
Mildly Dilated
Moderately Dilated
Severely Dilated
Not Recorded/Not Documented
Qualitative LV Function:
*
Normal
Mildly Decreased
Moderately Decreased
Severely Decreased
Not Recorded/Not Documented
Qualitative LV Size:
*
Normal
Mildly Dilated
Moderately Dilated
Severely Dilated
Not Recorded/Not Documented
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
ECG Rhythm (check all that apply):
*
Atrial Fibrillation
Atrial Flutter
Atrial Paced
Preexcitation
Sinus
Ventricular Paced
Other, Specify
Specify:
*
QRS Duration:
*
ms
ST=
Not Done
Not Recorded
EXERCISE FUNCTION
Exercise Test:
*
Yes
No
Date of Test:
*
mm/dd/yyyy
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:
*
meters
ST=
Not Done
Not Recorded
HEART CATHETERIZATION
Did Patient Undergo A Heart Catheterization As A Part Of The Initial Workup and Investigations At Presentation?:
*
Yes
No
Date of Test:
*
mm/dd/yyyy
Therapies at Cath (check all that apply):
*
IV Inotropes
Oral HF Meds
MCS: VAD
MCS: Other
Ventilated
None
MCS Other:
*
PA (sys) Pressure:
*
mmHg
ST=
Not Done
Not Recorded
Was the PA (sys) pressure impacted by the use of inotropes/vasodilators:
*
Yes
No
PA (dia) Pressure:
*
mmHg
ST=
Not Done
Not Recorded
Was the PA (dia) pressure impacted by the use of inotropes/vasodilators:
*
Yes
No
PA (mean) Pressure:
*
mmHg
ST=
Not Done
Not Recorded
Was the PA (mean) pressure impacted by the use of inotropes/vasodilators:
*
Yes
No
PCW (mean) Pressure:
*
mmHg
ST=
Not Done
Not Recorded
Was the PCW (mean) pressure impacted by the use of inotropes/vasodilators:
*
Yes
No
CO:
*
L/min
ST=
Not Done
Not Recorded
Was the CO impacted by the use of inotropes/vasodilators:
*
Yes
No
Cardiac Index:
*
L/min/m
2
ST=
Not Done
Not Recorded
HEMODYNAMICS
Systolic BP:
*
mmHg
ST=
Not Done
Not Recorded
Diastolic BP:
*
mmHg
ST=
Not Done
Not Recorded
Heart Rate:
*
bpm
ST=
Not Done
Not Recorded
LABORATORY
Report values closest to the time of presentation
Creatinine:
*
µmol/l
ST=
Not Done
Not Recorded
Total Bilirubin:
µmol/l
Total Serum Albumin:
g/l
Sodium:
mmol/L
Potassium:
mmol/L
Blood Urea Nitrogen:
mmol/L
ALT:
U/I
AST:
IU/I
BNP:
*
pg/ml
ST=
Not Done
Not Recorded
nt-pro BNP:
*
pg/ml
ST=
Not Done
Not Recorded
WBC:
*10
9
/L
Hemoglobin:
*
g/l
ST=
Not Done
Not Recorded
Platelets:
*10
9
/L
INR (if not anticoagulated):
Ratio
Lymphocyte:
*10
9
/L
TESTING
Did Patient Undergo A MRI As Part Of The Initial Workup and Investigation At Presentation?:
*
Yes
No
Date of Test:
*
mm/dd/yyyy
RV Ejection Fraction:
%
ST=
Not Done
Not Recorded
RV End-Diastolic Volume:
ml/m
2
ST=
Not Done
Not Recorded
LV Ejection Fraction:
%
ST=
Not Done
Not Recorded
LV End-Diastolic Volume:
ml/m
2
ST=
Not Done
Not Recorded
LV Mass:
g/m
2
ST=
Not Done
Not Recorded
LGE Amount:
Mild
Moderate
Severe
Not Done
None
LGE Amount (% of LV mass):
%
ST=
Not Done
Not Recorded
LGE Type (check all that apply):
Diffuse
Midwall
Patchy
Subendocardial
Subepicardial
Transmural
Extracellular Volume in Septum:
%
ST=
Not Done
Not Recorded
Extracellular Volume in Free Wall:
%
ST=
Not Done
Not Recorded
Native T1 in Septum:
ms
ST=
Not Done
Not Recorded
Native T1 in Free Wall:
ms
ST=
Not Done
Not Recorded
Genetic Testing Results:
*
Positive
Pending
Negative
Not Done
Genetic Testing (check all that apply):
Known Pathogenic Sarcomeric/Nuclear Mutation, Specify
Sarcomeric/Nuclear Mutation, Variant of Unknown Significance (VUS)
Inborn Error of Metabolism, Specify
Mitochondrial Mutation, Known
Neuromuscular Disease, Specify
Known Pathogenic Sarcomeric/Nuclear Mutation Specify:
Inborn Error of Metabolism Specify:
Neuromuscular Disease Specify:
Endomyocardial Biopsy:
Yes
No
Unknown
ISHLT PEDIATRIC HEART FAILURE REGISTRY
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