Information for Researchers

The TBRS 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:

If you would like access to the NORD Registry Demo data for a research project, please contact our registry administrator at Access to TBRS Registry data is contingent upon project approval by the TBRS Community Medical Advisory Board.