For Researchers
The DTRF Patient Registry collects disease-specific natural history data about individuals with Desmoid tumors, with the goal of improving the understanding of Desmoid tumors 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 for adults and pediatrics
- Clinical trial participation
- Financial Burden
- Co-morbidities
We are interested in sharing our data with you! If you would like access to the DTRF Patient Registry data for a research project, please contact our registry administrator at registry@dtrf.org for more information. Access to DTRF Patient Registry data is contingent upon project approval by the DTRF Patient Registry Advisory Board.