TRIS Project

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Last Updated: Jul 17, 2025, 02:53 PM

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, advanced treatment options, and support 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.

Kameron 24 years trisomy 18

Natalia2022-150.jpeg

A critical part of the TRIS project is the 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 Survey

To participate, the first step is to complete the enrollment form.

If you have already started your survey, please return to fill it out.

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.

Sign Up for the Survey

About the TRIS Project

The Tracking Rare Incidence Syndromes (TRIS) Project began in 2004 with a focus to raise awareness and increase the knowledge base about individuals with low incidence trisomy conditions including trisomy 18, trisomy 13 and trisomy 9 mosaicism by offering information to families and interested professionals such as educators, medical professionals and therapists. The project also focuses on encouraging appropriate services, treatment options and supports for children with rare trisomy conditions and their families.

Data collection with the TRIS Survey (Full, Modified and Follow-up versions) began in 2007. The surveys request information relating to medical conditions, education and therapy needs, developmental milestones, family issues and demographic information about the child and his/her family. The Follow-up survey collects information once a year (tracking aspect of project).

The project continues to recruit participants, analyze data and prepare results for dissemination on the TRIS website, at national and international conferences and publications in medical journals as well as newsletters of trisomy support organizations. There are also case studies and online modules with project results.

  • Deborah A. Bruns, Ph.D., Principal Investigator
    Southern Illinois University Carbondale
    Carbondale, IL
  • Shirley Lockwood, L.V.N., Research Coordinator
    Parent of an adult with partial trisomy 6p
    Escondido, CA