Spinraza (nusinersen) SMA Pregnancy Exposure Study Within Existing SMA Registries

ENCePP Code of conduct

Yes

Data sources

• Data source(s):
  Longitudinal Data Collection from Patients with Spinal Muscular Atrophy (SMArtCARE)
• Data source(s), other:
  ISMAR, United Kingdom-Adult SMA REACH and Polish SMA Patient registry
• Data sources (types):
  Disease registry

  Electronic healthcare records (EHR)

Use of a Common Data Model (CDM)

• CDM mapping:
  No

Data quality specifications

• Check conformance:
  Unknown
• Check completeness:
  Unknown
• Check stability:
  Unknown
• Check logical consistency:
  Unknown

Data characterisation

• Data characterisation conducted:
  No

Procedures

No information provided.