Cardiac function

Cardiomyopathy CR  PR  datestamped 

Specifies whether the individual has been diagnosed with a cardiomyopathy.

If the value is No, registries should ask the data provider at each update whether this value is still current. If the value is Yes, the diagnosis date must be collected in the item Cardiomyopathy diagnosis date and the datestamp for this item is not required.

Item type: yes/no
Classification:
Cardiomyopathy diagnosis date CR  PR 

Date when the individual's cardiomyopathy was first diagnosed.

Item type: date
Consistency rules:

If a value for this item is provied, Cardiomyopathy must have the value Yes.

Arrhythmia CR  PR  datestamped 

Specifies whether the individual has been diagnosed with an arrhythmia that requires treatment or monitoring.

If the value is No, registries should ask the data provider at each update whether this value is still current. If the value is Yes, the diagnosis date must be collected in the item Arrhythmia diagnosis date and the datestamp for this item is not required.

Item type: yes/no
Classification:
Arrhythmia diagnosis date CR  PR 

Date when the individual's cardiomyopathy was first diagnosed.

Item type: date
Consistency rules:

If a value for this item is provied, Arrhythmia must have the value Yes.

Cardiac imaging performed CR  datestamped 

Specifies whether the individual has ever had cardiac imaging, for example cardiac MRI or echocardiography.

Item type: yes/no
Usage in other datasets: DMD
Record

Cardiac imaging result CR         

If cardiac imaging had been performed at baseline, the results of the most recent imaging must be collected in this record. At registry updates, any further imaging results obtained since the last update should be added in further record instances.

Cardiac imaging date CR 

Date of the cardiac imaging.

Item type: date
Usage in other datasets: DMD
Cardiac imaging type CR 
Item type: single selection
Usage in other datasets: DMD
Value ID Description
Echocardiography

Echocardiography

Cardiac MRI

Cardiac MRI

Left ventricular ejection fraction CR 

Left ventricular ejection fraction as percentage.

Item type: decimal
Unit: percent
Usage in other datasets: DMD
Fractional shortening CR 

Fractional shortening as percentage.

Item type: decimal
Unit: percent
Usage in other datasets: DMD
Electrocardiography results CR 

At baseline, the results of the latest electrocardiography must be collected. At registry updates, all results since the last update should be added.

Item type: single selection
Value ID Description Classification
Normal

Normal

Abnormal but not clinically relevant

Abnormal but not requiring treatment or monitoring

Abnormal and clinically relevant

Abnormal and requiring treatment or monitoring

Abnormal with unknown clinical relevance

Abnormal but it is unknown whether treatment or monitoring is required