REGISTRY: A registry is a database that collects and stores information about a group of individuals, most of whom are living with the same disease. Registries are a powerful tool for focusing research on a specific disease. One challenge of advancing the scientific understanding of rare diseases is finding enough people who eligible to participate in research studies. Establishing a registry can help tackle that challenge.
We will start with just contact registry. But we will be launching a more in-depth data collection program to document the lived experience of these syndromes in 2022.
Purpose:
- Patients in the registry can be notified when a clinical trial or research opportunity becomes available.
- Medical researchers and Industry Partners can seek out patients to be involved in surveys, focus groups, and clinical trials.
- Patients can learn about opportunities within the Ring14 Community to connect, to learn, and to give back.