Clinical registries in general

What is a clinical registry?

A clinical registry is a collection of information about individuals, usually focused around a specific diagnosis or condition.

Why are clinical registries needed?

Clinical registries can provide health care professionals and researchers with first-hand information about individuals with these conditions, both individually and as a group. Clinical registries might be beneficial to involved patients, doctors, and researchers; the design of a specific registry is of key importance.

• Patients might partially access information within the registry, most typically about their own treatment.
• Treating doctors keep better track of their patients, and obtain regular reports on the numbers of patients involved in the entire registry.
• Researchers obtain statistically significant information after a summary evaluation of collected data; in this way, they can assess the effectiveness of a treatment procedure, or epidemiology of a specific condition, for example.

How is a clinical registry different from a clinical trial?

A clinical trial is a research study in which some individuals receive an experimental intervention, and are compared to other individuals with the same condition who receive the standard intervention or no intervention; the results are used to evaluate the relative effects of the interventions on health-related outcomes.

A clinical registry is a voluntary collection of information about individuals with certain diseases or conditions. All patients recorded in a clinical registry obtain the best available care as considered by their treating doctor.