What Is a Registry?
A disease registry is a way to collect health information from people with a specific condition. If you choose to take part, your information is gathered during your regular doctor visits, no extra appointments or procedures are needed.
The information you provide is combined with data from other participants and does not include your name or personal details. This helps doctors and researchers better understand how the condition affects people in everyday life, outside of clinical trials. The findings are often shared in medical journals to help improve care for others in the future.
Disease registries have several goals that may include:
- Helping doctors understand how people are diagnosed and what challenges they face
- Providing more real-world information to guide better care
- Learning more about how a disease works and how it changes over time
- Tracking how well treatments work and monitoring their safety profile in the long term
- Understanding how a condition affects daily life and overall well-being
Registries, like the one created for hypophosphatasia (HPP), are especially important for rare diseases. They help researchers and health agencies, such as the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA), make informed decisions and support doctors in providing care based on real-world evidence.