A Prospective, Long-Term Registry of Patients with a Diagnosis of Spinal Muscular Atrophy (SMA) - (RESTORE)

ENCePP Code of conduct

No

Data sources

• Data source(s):
  Longitudinal Data Collection from Patients with Spinal Muscular Atrophy (SMArtCARE)
• Data sources (types):
  Disease registry

  Electronic healthcare records (EHR)

  Other
• Data sources (types), other:
  Prospective patient-based data collection

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