{"id":39,"date":"2018-04-13T06:59:16","date_gmt":"2018-04-13T06:59:16","guid":{"rendered":"http:\/\/ring14usa.com\/?page_id=39"},"modified":"2026-04-08T10:26:23","modified_gmt":"2026-04-08T15:26:23","slug":"family-registration","status":"publish","type":"page","link":"https:\/\/ring14usa.com\/index.php\/families\/family-registration\/","title":{"rendered":"Family Contact Registry"},"content":{"rendered":"
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FAMILY CONTACT REGISTRY<\/h3>\n<\/div>\n<\/div><\/div><\/div><\/div>
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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.<\/p>\n

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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.<\/p>\n

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Purpose<\/strong>: <\/h2>\n

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  • Patients in the registry can be notified when a clinical trial or research opportunity becomes available.<\/li>\n<\/ul>\n

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    • Medical researchers and Industry Partners can seek out patients to be involved in surveys, focus groups, and clinical trials.<\/li>\n<\/ul>\n

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      • Patients can learn about opportunities within the Ring14 Community to connect, to learn, and to give back.<\/li>\n<\/ul>\n

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        Please Register by filling out form below:<\/h2>\n

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