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 firstname.lastname@example.org or leave a message on the project’s Facebook page at https://www.facebook.com/TRIS.Trisomy.project
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 email@example.com if you have questions. We look forward to hearing from you.
TRIS project Staff