Cardiac function

The items in this group should be collected for individuals with known cardiac involvement or when cardiac involvement is possible based on their diagnosis. In disease-specific registries where no cardiac involvement is expected, these items may be omitted altogether.

Cardiomyopathy 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:
Usage in other datasets: LGMD
Cardiomyopathy diagnosis date

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.

Usage in other datasets: LGMD
Arrhythmia 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:
Usage in other datasets: LGMD
Arrhythmia diagnosis date

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.

Usage in other datasets: LGMD
Record

Cardiac imaging result              

At baseline and registry updates, the results of the most recent imaging should be collected in this record.

Cardiac imaging date

Date of the cardiac imaging.

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

Echocardiography

Cardiac MRI

Cardiac MRI

Left ventricular ejection fraction

Left ventricular ejection fraction as percentage.

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

Fractional shortening as percentage.

Item type: decimal
Unit: percent
Usage in other datasets: DMDLGMD
Record

Electrocardiography result              

If cardiac items are collected, the results of the latest electrocardiography should be collected at baseline. At registry updates, all results since the last update should be added.

Electrocardiography date
Item type: date
Electrocardiography result
Item type: single selection
Usage in other datasets: LGMD
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