An international disease registry collecting data on manifestations, interventions and outcomes in patients with tuberous sclerosis complex - TOSCA

ENCePP Code of conduct

No

Data sources

• Data sources (types):
  Electronic healthcare records (EHR)

  Other
• Data sources (types), other:
  The data for this study will be retrieved from hospital discharge files, clinical records, electronic medical records, patients' questionnaires, and ad hoc clinical databases.

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