For Researchers

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

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation

We are interested in sharing our data with you! If you would like access to the TSW Patient Registry data for a research project, please contact our registry administrator at info@itsan.org for more information. Access to TSW Patient Registry data is contingent upon project approval by the TSW Patient Registry Advisory Board.