Trisomy 13, Trisomy 18 and related disorders
~ The TRIS Project ~
Tracking Rare Incidence Syndromes
The TRIS project provides a means to change perceptions about children with rare trisomy conditions. Through data from TRIS Surveys, new information is available about long-term survival, positive surgical outcomes and achievement of developmental milestones such as using gestures and vocalizations to communicate, walking (with or without assistance) and interacting with family members.
To date (February, 2019), a total of 1167 children and adults are enrolled in the project; many are SOFT members. A combined total of 753 baseline surveys representing living children and adults and angels with rare incidence conditions such as trisomy 18, trisomy 13 and trisomy 9 mosaic were completed as of 2/28/19. Approximately 1100 follow-up surveys have also been completed. Your participation is welcomed and encouraged.
Debbie Bruns, PhD is the project lead researcher at Southern Illinois University, Carbondale, IL. Open the TRIS project’s web page where you can contact Debbie, enroll in the project (no cost), open the TRIS project brochure, and gain access to the TRIS Facebook page.
The TRIS project continues to respond to parent and caregiver queries via email and Facebook posts. Recent responses to queries have been shared with interested individuals within the United States, Canada and South Africa. Outreach to recruit new parents to enroll in the project also continues via the project’s Facebook page and webpage as well as parent-to-parent contact.
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