Currently, Previously and
Never with suitable user-friendly wording. See the
introduction
for more information and alternative ways to collect this item.
Specifies whether the individual is currently using or has ever used non-invasive ventilation due to their neuromuscular condition over a period of two weeks or more. If the value is Currently, Previously, or Sometime, one or more instances of the record Non-invasive ventilation episode should be provided to specify details.
Non-invasive ventilation (NIV) uses airway support which is administered through a nose or face mask.
| Item type: | single selection |
| Usage in other datasets: | SMALGMD |
This is an episode record: For each record instance, the following dates must be captured:
Start date: The month and year when the condition
described by the record started to hold, if known
Stop date: The month and year when the condition
ceased to hold, if applicable and known
Ongoing date: The month and year on which the
condition was known to hold, if applicable
See the introduction for more information.
Episode that describes current or previous usage of non-invasive ventilation due to the individual's neuromuscular condition. Only periods of two weeks or more are to be added.
| Item type: | single selection |
| Usage in other datasets: | SMASMALGMDLGMD |
Currently, Previously and
Never with suitable user-friendly wording. See the
introduction
for more information and alternative ways to collect this item.
Specifies whether the individual is currently using or has ever used invasive ventilation due to their neuromuscular condition over a period of two weeks or more. If the value is Currently, Previously, or Sometime, one or more instances of the record Invasive ventilation episode should be provided to specify details.
Invasive ventilation (IV) is surgery that creates an opening in the windpipe which allows breathing through a tracheostomy tube rather than through the nose and mouth.
| Item type: | single selection |
| Related items in previous version: | 13.01 |
| Usage in other datasets: | SMALGMD |
This is an episode record: For each record instance, the following dates must be captured:
Start date: The month and year when the condition
described by the record started to hold, if known
Stop date: The month and year when the condition
ceased to hold, if applicable and known
Ongoing date: The month and year on which the
condition was known to hold, if applicable
See the introduction for more information.
Episode that describes current or previous usage of invasive ventilation due to the individual's neuromuscular condition. Only periods of two weeks or more are to be added.
| Related items in previous version: | 13.02, 13.03, 13.04 |
| Item type: | single selection |
| Usage in other datasets: | SMASMALGMDLGMD |
Specifies how often the individual currently uses assistance in airway clearance and/or secretion mobilisation, for example using suction, chest percussion or a cough assist device.
| Item type: | single selection |
| Related items in previous version: | 13.05, 13.07 |
| Usage in other datasets: | SMA |
Types of airway clearance the individual is currently using.
| Item type: | multiple selection |
| Consistency rules: | If a value is specified, |
| Related items in previous version: | 13.06 |
At baseline, the result of the most recent test must be collected; at updates, the result of every test since the previous update must be collected. For clinician-reported registries, the date of the test or date of the report as well as the values for FVC and PCF must be collected, whereas for patient-reported registries it is sufficient to collect the date of the test or report.