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TRIS Project


Tracking Rare Incidence Syndromes project Main Content

College of Education and Human Services

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.

TRIS Project Update - April 2016

As of April 30, 2016: 419 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=720 total; 58.2%) and 211 TRIS Modified surveys (infants living two months or less, n=245 total; 86.1%) were completed.  Read on for more details.

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.

I you prefer paper copies, please send an email to or leave a message on the project’s Facebook page at

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 if you have questions. We look forward to hearing from you.

Thank you, 
TRIS project Staff


Journey's Magazine

The College of Education and Human Services (COEHS) at Southern Illinois University Carbondale publishes an online magazine, Journeys. Articles highlight student and faculty achievements, events and the like. The May 2014 issue includes an article featuring Emily Campbell, Undergraduate Assistant with the TRIS project (fall 2012-spring 2014). The issue also has an interview with Deborah Bruns, Principal Investigator of the TRIS 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

(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.

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