What Is a Registry?
A registry is a specific type of medical observational study. Health-related information from regular medical practice is recorded in a database and regularly analyzed. The analysis results are published in medical journals.
The health-related information might come from patients with a certain disease and/or treatment or both, who voluntarily participate in the registry. Patients share their medical information to help healthcare professionals better understand the disease and its management.
Registry data is collected by the patient’s doctor as regular medical practice, avoiding any additional visits or procedures in connection with the registry.
The aims of the registry are centered around the patient and may include:
- Understanding diagnostic methods
- Broadening the evidence base for better patient management
- Improving the understanding of a disease
- Evaluating long-term treatment
- Monitoring health-related quality of life
Patient names are concealed in the data collected, grouped and analyzed by physicians with extensive scientific and clinical expertise, and then reported to the medical community, including through publications in medical journals, to help optimize patient care.
The analyses may also be provided to the regulatory authorities (such as the US Food and Drug Administration [FDA] or European Medicines Agency [EMA]) to help understand the effect of available treatments. There are increasing numbers of registries in existence, which investigate a broad range of diseases. They are gaining particular importance in our understanding of chronic, rare diseases, such as hypophosphatasia (HPP). The disease registries play an important role in improving health outcomes. Health-care providers can use the registry information to improve best practices and provide more accurate advice to patients.