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Clinical observations

Items in this group
Symptom onset CR  PR  datestamped 

Period in which the first symptoms manifested, as reported by the individual or their family. Any symptoms which were not considered abnormal at the time, but can retrospectively be attributed to the disease, should be considered as well. If the value is Asymptomatic, this item must be collected at each update until the individual shows first symptoms. If the value is not Asymptomatic, the datestamp is irrelevant and therefore not required.

This item refers to symptoms of the diagnosis specified in Diagnosis.

Item type: single selection
Consistency rules:

If values for both this item and Symptom onset date are provided, they must be consistent.

Usage in other datasets: SMADMDLGMD
Value ID Description Classification
Antenatal onset

Antenatal onset (before birth)
Congenital onset

Congenital onset (present at birth)
Neonatal onset

Neonatal onset (within the first 28 days of life)
Pediatric onset

Pediatric onset (between 28 days and 15 years)
Infantile onset

Infantile onset (between 28 days and 1 year)
Childhood onset

Childhood onset (between 1 and 5 years)
Juvenile onset

Juvenile onset (between 5 and 15 years)
Adult onset

Adult onset (16 years or later)
Young adult onset

Young adult onset (between 16 and 40 years)
Middle age onset

Middle age onset (between 40 and 60 years)
Late onset

Late onset (60 years or later)
Asymptomatic

Asymptomatic (the individual has never had symptoms of their diagnosed neuromuscular condition)
Symptom onset date CR  PR 

Date of the onset of the first symptoms as defined in the item Symptom onset. Registries may ask for the onset age in their data collection form and calculate the date from the date of birth.

Item type: date
Usage in other datasets: SMADMDLGMD
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