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Tracking Rare Incidence SyndromesMission Statement The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families. |
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Please use the Pre-Enrollment request form to sign up to complete the TRIS Survey. If you have already started your survey, please click here to return to it. You can email us at tris@siu.edu if you have questions. We look forward to hearing from you. Thank you, September, 2009: Trisomy 18 and Trisomy 9 Survival Data As of September 15, 2009, 153 Full TRIS Surveys were completed (children living longer than two months). Of the total, 50 children had a trisomy 18 variant (32.7%) including 34 full, nine mosaic, five partial, one tetrasomy and one isochromosome 18p. At the time of survey completion, 37 children were living (74%) (mean = 106 months, range two to 394 months). The remaining 13 survived between two to 258 months (mean = 64 months) (32%). Data representing 26 children or adults with a form of trisomy 9 is available on the TRIS Survey (n=153, 17%). This group represented nine individuals with trisomy 9 mosaic, 11 partial, and six with trisomy 9p only. In addition, five individuals with partial trisomy 9 also had an affected p arm. All are living with a range two to 468 months of age (mean=90 months). Only one infant with trisomy 9 mosaic is represented in the Modified Survey (n=124). The child passed away on the day of his birth in 1996. August, 2009: Trisomy 13 survival data As of August 1, 2009, 145 Full TRIS Surveys were completed (children living longer than two months). Of the total, 44 children had a type of trisomy 13 (30.3%) including 25 full, nine mosaic and 10 partial. At the time of survey completion, 30 children were living (68%) (mean = 100 months, range two to 405 months). The remaining 14 survived between two to 290 months (mean = 64 months) (32%). The Modified TRIS Survey collects data on infants who survived less than 60 days. Of the 122 completed surveys, 74% represented infants with trisomy 13 (n = 90; 89 full, one mosaic). Close to half (43%) were stillborn or passed away during labor and delivery. The next largest group (n = 10) survived for three days post-birth. TRIS Survey data is in the process of being analyzed in the following areas:
The TRIS project staff has several upcoming presentations on these topics and will begin writing the results for publication. Stay tuned! The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the
knowledge base on rare incidence trisomy conditions, and to make this
information available to families and interested educational, medical and
therapeutic professionals. Related outcomes will be the development of
appropriate services, advance treatment options, and supports during the
prenatal, newborn and subsequent developmental periods. Children affected
by T18, T13, and other rare syndromes possess unique needs requiring
education of those involved in their daily, educational and medical care. Sponsors:
External Resources
You, too, can make an online, tax-deductible donation to TRIS. |
