Bone

Scoliosis diagnosis CR  PR  longitudinal 

Specifies whether the Cobb angle is above or below 30°, or alternatively whether scoliosis has been diagnosed without reference to the Cobb angle. Whenever the Cobb angle is known to be above 30°, registries should provide Cobb angle above 30 as value. If the Cobb angle is unknown, but scoliosis was diagnosed, the value Scoliosis diagnosed should be provided instead. Whenever no scoliosis has been diagnosed or the Cobb angle is known to be 30° or less, the value Scoliosis not diagnosed should be provided. Registries, in particular patient-reported registries, may ask about a scoliosis diagnosis without reference to the Cobb angle in a yes/no question where the replies are mapped to Scoliosis diagnosed and Scoliosis not diagnosed, respectively.

If the value is Scoliosis not diagnosed at the baseline entry, but the individual has had surgery that corrected a previous scoliosis, a backdated value for this item should be provided that indicates the scoliosis status before the surgery.

Item type: single selection
Related items in previous version: 9.01
Value ID Description Classification
Cobb angle above 30

Cobb angle greater than 30°

Scoliosis diagnosed

Scoliosis diagnosed, Cobb angle unknown

Scoliosis not diagnosed

Scoliosis not diagnosed or Cobb angle lower than or equal to 30°

Scoliosis surgery performed CR  PR  longitudinal 

Specifies whether the individual has ever had surgery specifically to try and correct scoliosis.

Item type: yes/no
Related items in previous version: 9.02
Usage in other datasets: SMA
Record

Scoliosis surgery CR         

Surgery for invasive lengthening of growing rods must not be included in this record.

Scoliosis surgery date CR 

Date of the scoliosis surgery.

Item type: date
Related items in previous version: 9.06
Usage in other datasets: SMA
Scoliosis surgery type CR 
Item type: single selection
Related items in previous version: 9.03
Value ID Description
Arthrodesis

Arthrodesis

Growing rods

Growing rods

Spinal fractures diagnosed CR  PR  datestamped 

Specifies whether the individual has ever had any spinal fractures confirmed by imaging. A datestamp is only required if the value is No.

Item type: yes/no
Related items in previous version: 9.07
Spinal fracture date CR 

Date of the first confirmed spinal fracture.

Item type: date
Related items in previous version: 9.09
Record

Non-spinal fractures period CR  PR      reference period 

The first reference period collected at baseline should range from the date of birth of the individual to the date of the baseline entry so that the item Non-spinal fractures diagnosed specifies whether a non-spinal fracture has ever been diagnosed up to that point. For registry updates, the period should range from the previous entry to the date of the current entry, so that Non-spinal fractures diagnosed specifies whether a fracture has been diagnosed since the last update.

Using reference periods allows registries to explicitly state that no fractures have been diagnosed in a certain period.

Non-spinal fractures diagnosed CR  PR 

Specifies whether any fractures other than spinal have been diagnosed.

If the value is Yes, the dates and locations of the fractures must be collected in instances of the record Non-spinal fracture.

Item type: yes/no
Consistency rules:

Must be Yes if any instance of the record Non-spinal fracture with a datestamp within this reference period is provided.

Related items in previous version: 9.10
Record

Non-spinal fracture          

For each non-spinal fracture, the location and date date must be collected in an instance of this record. If provided, the datestamp of this record must be the date of the diagnosis of the fracture.

Non-spinal fracture date

Date of the diagnosis of the fracture.

Item type: date
Related items in previous version: 9.11
Non-spinal fracture location
Item type: single selection
Related items in previous version: 9.13
Value ID Description
Upper arm

Upper arm

Lower arm

Lower arm

Upper leg

Upper leg

Lower leg

Lower leg

Hand

Hand

Finger

Finger(s)

Pelvis

Pelvis

Ankle

Ankle

Foot

Foot

Toe

Toe(s)

Skull

Skull

Jaw

Jaw

Rib

Rib(s)

Scapula

Scapula

Clavicle

Clavicle

Non-spinal fracture side

Specifies on which side of the body the fracture is located in case Non-spinal fracture location specifies a bone or body part that comes in pairs. For all other values of Non-spinal fracture location (Pelvis, Skull and Jaw), this value must be unspecified.

Item type: single selection
Related items in previous version: 9.12
Value ID Description
Left

Left side

Right

Right side