About Galactosemia Patient Registry
- About Galactosemia 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 Galactosemia Patient Registry serves to:
- Provide a convenient online platform for patients or their legally authorized representative to report cases of Classic Galactosemia, Duarte Galactosemia, Galactokinase deficiency, Epimerase deficiency
- Assist researchers studying Galactosemia and facilitate recruitment for external research studies
- Characterize and describe the Galactosemia population as a whole.
- Assist the Galactosemia community with the development of recommendations for standards of care.
- Conduct a prospectively-planned natural history study that will improve understanding of Galactosemia and its progression over time.
What types of data will be collected in the Galactosemia Registry? Is the data secure?
The Galactosemia Registry collects data on the following topics:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
The Galactosemia 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.