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Tracking Rare Incidence Syndromes (TRIS)

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Tracking Rare Incidence Syndromes project

College of Education and Human Services

The TRIS project brochure includes information about the scope of the project, outcomes to date and photos showcasing children with various rare trisomy conditions. Please feel free to download the brochure and share it with family members and medical professionals.

If you prefer paper copies, please send an email to tris@siu.edu or leave a message on the project’s Facebook page at https://www.facebook.com/TRIS.Trisomy.project

Case Studies

The TRIS project will post a case study each month during 2014 to highlight long-term survivors with various trisomy conditions. Check our Case Studies page for a complete listing.

Each case study will include birth information, medical conditions and their resolution and developmental milestones. There will also be a newborn photo along with a current photo of each child. All case studies can be downloaded in PDF format. Please share them with families and medical professionals. 

International Trisomy Alliance Newsletter

(Issue 1, December 2013). The International Trisomy Alliance is a volunteer, not-for-profit
organization focusing on trisomy 13 and trisomy 18. The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources, and to be a mechanism for sharing between groups.

TRIS Project Update - April 2014

As of April 1, 2014, 313 Full Surveys (children living at least two months; collection of baseline data) and 184 Modified Surveys (infants living two months or less) were completed for children and adults with rare trisomy conditions. Follow-up Surveys are sent on the anniversary of initial completion of the Full TRIS Survey. Since February 1, 2008, a total of 496 Follow-up Surveys were submitted (Year 1=173, Year 2=134, Year 3=95, Year 4=57, Year 5=27 and Year 6=10).

At this time, the focus remains on data analysis for long-term survivors diagnosed with full trisomy 18 and full trisomy 13. One publication focusing on trisomy 18 has been published in the American Journal of Medical Genetics and one discussing children with trisomy 13 is under review with the same journal. In addition, TRIS project is analyzing data on 25 children with trisomy 9 mosaic and preparing to write up the results. This is a follow-up to a similar investigation of 14 children which was published in 2011. Also, a presentation proposal was recently accepted for the 2014 meeting of the American Academy for Cerebral Palsy and Developmental Medicine titled, "Not incompatible with life: Long-term survivors with trisomy 18 and trisomy 13". Finally, case studies will continue to be uploaded throughout 2014. Lists of TRIS project publications and presentations have also been added. These materials can be downloaded in PDF format and shared with families and medical professionals.

Please continue to spread the word and encourage parents, grandparents and guardians to share information about their child. The TRIS project brochure is available for download from the homepage of the TRIS project website and paper copies are available (refer to TRIS project email address below). This information is compiled, analyzed and prepared for presentations and publications that are disseminated to other families as well as medical professionals including nurses and clinical geneticists.

Additional information from the TRIS Surveys is available by request. Please send an email to tris@siu.edu with specific questions.


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,
TRIS project Staff


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.

A critical part of the TRIS project is dissemination of The TRIS Survey. The survey will be used to collect and analyze data focusing on common medical conditions, developmental milestones, therapeutic needs, family-related concerns, and demographic data of families with a child (living as well as deceased) with a rare trisomy condition.

Sponsors:

External Resources

Living with Trisomy: TRISOMY SUPPORT,
Families Supporting Families

You, too, can make an online, tax-deductible donation to TRIS.