Welcome!
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 Wolfram Syndrome Global Patient 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 for patient support and disease treatment.
- Assist researchers studying the pathophysiology of rare diseases.
- Support the design of clinical trials that explore new rare disease treatments.
- Notify participants of Wolfram syndrome clinical trials when the opportunity arises, therefore connecting researchers/ pharmaceutical companies with an eligible and interested WS patient population.
The Wolfram Syndrome Registry is available in English, Spanish, and French.
What types of data will be collected in the Wolfram Syndrome Global Patient Registry?
The Wolfram Syndrome Registry collects data on the following topics:
- Socio-demographics
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The Wolfram Syndrome Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS and provides encryption to maintain this protection for patient information between the registry platform server and the database.