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TBRS Community Patient Registry Data Are Now Available

Applications are open to TBRS Collaborative Research Network Members to access registry data!

The TBRS Community Patient Registry collects disease-specific natural history data about individuals with TBRS, with the goal of improving the understanding of TBRS and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

  • Socio-demographics
  • Genetics
  • Development and medical history
  • Treatment and disease progression
  • Quality of life

If you would like access to the NORD Registry data for a research project, please apply here.

The TBRS Community’s fundraising efforts have made it possible to offer Registry results at no charge to academic researchers. Your donation can help us continue to share data widely. Please consider supporting us.

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