{"id":1629,"date":"2022-03-23T02:14:47","date_gmt":"2022-03-23T07:14:47","guid":{"rendered":"https:\/\/ring14usa.com\/?page_id=1629"},"modified":"2026-04-07T06:53:09","modified_gmt":"2026-04-07T11:53:09","slug":"ring14-data-collection-program","status":"publish","type":"page","link":"https:\/\/ring14usa.com\/index.php\/ring14-data-collection-program\/","title":{"rendered":"Ring14 Data Collection Program"},"content":{"rendered":"
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See how sharing patient information will collectively make a difference in finding treatments for Ring14 and related disorders.<\/h3>\n

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Participating in a data collection program is one of the most important things that families of a child with a Ring14 or related\u00a0disorders can do. Having a robust database will generate more interest from clinicians, researchers and drug developers - enabling us to get to effective treatments for our children. Participation includes completing a set of carefully designed, validated, caregiver reported surveys on the health of your affected child, who has Ring14 or a related neurodevelopmental disorder of the 14th chromosome.<\/p>\n

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Join our Ring14 Data Collection Program<\/a><\/div>\n

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The Ring14 community is partnering with RARE-X [a 501(c)(3) nonprofit] to build a Data Collection Program<\/strong> (DCP) for our families. When you participate in the Ring14 and related disorders Data Collection Program, you\u2019ll help accelerate research and the development of effective treatments.<\/p>\n

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The Ring14 Data Collection Program will be patient-owned<\/strong> but enabled by RARE-X technology. All data governance, consent support, and data security will be put in place by RARE-X. Ring14 families will benefit from a streamlined process for collecting research-ready data in a phased approach.<\/p>\n

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Community Launch Video<\/a><\/div>\n

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To learn more, watch our Community Launch Video, which was jointly hosted by Ring14 USA and RARE-X, recorded on August 10th, 2022.<\/strong><\/p>\n

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BENEFITS OF PARTICIPATING IN OUR DATA COLLECTION PROGRAM<\/h2>\n

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We are building the Ring14 Data Collection Program<\/strong> to:<\/p>\n

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