Information for Researchers

“Registries for Rare Diseases: Involve the Patient” Originally published on Medscape Rare Diseases as part of the NORD and Medscape Editorial Collaboration.


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:

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