About OMS Patient Registry
- About OMS 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 and development of published literature for caregivers. The OMS Registry serves to:
- Provide a convenient online platform for patients or their legally authorized representative to report cases of rare diseases.
- Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of rare diseases and their progression over time.
- Characterize and describe the rare disease population as a whole.
- Assist the rare disease community with the development of recommendations for standards of care.
- Assist researchers studying the pathophysiology of rare diseases.
- Support the design of clinical trials that explore new rare disease treatments.
What types of data will be collected in the OMS Registry? Is the data secure?
The OMS Registry collects data on the following topics:
- Medical and diagnostics
- Treatment, therapies, and disease progression
- Management of care
- Long term effects and Quality of life
The OMS 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.