There Is Power in Numbers
Each person’s story matters. Registries turn each patient’s experience into quality data that can lead to new discoveries and research advances.
Rare Diseases Registry Program (RaDaR) Helps You:
Registries Connect Patient Communities with Researchers
A registry is a collection of standardized information about a group of individuals, such as those living with the same disease, that is used for a variety of specific purposes. A registry is a powerful tool for collecting information about patients diagnosed with the same rare disease. One difficulty of learning more about rare diseases is the challenge of finding enough people eligible to participate in research studies. The more participants in a study, the more powerful the results. Every person matters!
When you create a rare disease registry, you bring together the entire community, which includes patients, caregivers, clinicians, researchers, and industry. Understanding the varied needs of all members of the rare disease community is important so you can create a registry that patients and caregivers want to join, and clinicians, researchers, and industry want to use.
RaDaR provides step-by-step guidance and tools for building registries based on good data practices.
The Rare Diseases Registry Program (RaDaR) website was created to provide advice on setting up and maintaining good-quality registries for rare diseases to stimulate research. RaDaR enables collaborative sharing of information and tools to promote data standardization and integration from the earliest stages of registry development.