National Neuromuscular Database (NND)

Key Challenges:

  • Combine clinical data from different partner networks
  • Coordinate partners in the common definition of data
  • Work with differing data collection technologies
  • Deliver data to partner organisation according to data sharing agreements
  • Respond to data analysis requests
  • Clean and manage data collected in clinical settings

The Solution:

  • Host and maintain a Clearwater data warehouse
  • Integrate Clearwater and Clarinet
  • Populate a Clearwater Metadata Repository
  • Publish an online annotatable Data Dictionary
  • Host regular technical meetings
  • Construct data cleaning and analysis pipelines
  • Work closely with network data managers
  • Establish a formal data import, review and release process

The Result:

  • An operational data warehouse populated from heterogeneous source data
  • Automated support for data import, cleaning, analysis and export 
  • Data sharing facilities made available to partner organisations
  • Accelerated resolution of data definition problems
  • Routine availability of a coherent data set derived from multiple clinical networks