Learn About Registries

Learn What Is a Registry

Registries collect contact and demographic information, patient experience, clinical data, and other types of information. The patient, the patient’s parent/guardian, or the patient’s doctor(s) may provide the information to the registry. The registry information can help you determine the following:

  • How many people are living with the disease?
  • Is the disease more common in males or females, children or adults, in certain ethnic groups, or in particular parts of the world?
  • What are the experiences, perspectives, needs, and priorities of people living with the disease?
  • How does the disease develop and progress?

This information can be used to develop a more comprehensive understanding of the disease, improve patient care, identify treatments, and advance research toward finding a cure.

When you create a rare disease registry, you bring together the entire community which includes patients, caregivers, clinicians, researchers, and industry. To create a registry that patients and caregivers want to join, and that clinicians, researchers, and industry want to use, it’s important to understand the varied needs of the stakeholders in the rare disease community.