Registries should use the general consensus of what constitutes a DMT for a given disease area and include predefined values in their data collection form. Where no such consensus exists, registries should define a DMT as a pharmacological treatment that affects the underlying pathology or pathophysiology of the disorder (cf. Cummings 2006). When in doubt, a given treatment should be considered as disease-modifying.
Specifies whether the individual has ever received a disease-modifying therapy for their neuromuscular condition.
| Item type: | single selection |
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.
International Nonproprietary Name (INN) of the disease-modifying therapy the individual is receiving or has received at some point.
| Item type: | free text |
Specifies whether this therapy is ongoing or stopped.
| Item type: | single selection |
| Consistency rules: | If a value for |
| Usage in other datasets: | SMADMD |
The disease-modifying therapies are collected in an episode record which already encodes whether the therapy is ongoing or has stopped by providing a value for Ongoing date or Stop date, respectively. However, in case the therapy is stopped, but the stop date is not known or has not been entered by the user and thus no value for Stop date can be provided, it is still important to encode this information. Therefore, unlike the other episode records in the dataset, the DMT record contains this item as a fallback.