About DTRF Desmoid Tumor Patient Registry
- About DTRF Desmoid Tumor Patient Registry
What is a patient registry?
A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The DTRF Patient Registry serves to:
- Provide a convenient online platform for patients or their legally authorized representative to report cases of desmoid tumors.
- Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of desmoid tumors and their progression over time.
- Characterize and describe the desmoid tumor patient population as a whole.
- Assist the medical community with the development of recommendations for standards of care.
- Assist researchers studying the pathophysiology of desmoid tumors.
- Support the design of clinical trials that explore new desmoid tumor treatments.
What types of data will be collected in the DTRF Patient Registry? Is the data secure?
The DTRF Patient Registry collects data on the following topics:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
The DTRF Patient Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.