TRIS: Ongoing Research
My name is Deborah Bruns. I am a Professor at Southern Illinois University Carbondale in the Department of Counseling, Quantitative Methods and Special Education in Carbondale, IL, USA. In 2007, I began the TRIS project.
Deb with a pupil
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About the TRIS Project
The Tracking Rare Incidence Syndromes (TRIS) Research Project seeks to increase knowledge about trisomy 13 and 18 and other rare conditions by surveying parents, analyzing data and sharing the results with medical professionals and families. The TRIS Survey collects information about pregnancy and birth, medical conditions, treatments, family support, services including early intervention, educational and therapeutic, and developmental milestones. |
TRIS Project
There is a a recurring need for concise and accessible information to showcase the abilities and needs of children diagnosed with low incidence trisomy conditions. To this end, online modules have been developed providing historical background, relevant literature, overview of daily and medical care, and recommendations for monitoring key medical needs based on research and anecdotal reports. Additional family support information has been included along with examples of news articles. It is hoped these modules are shared with expectant parents, families with a child diagnosed with full trisomy 18 and full trisomy 13 and also with medical professionals and others caring for the child including therapists and teachers. To view and download modules please go to: http://tris.siu.edu/modules/index.phptris.siu.edu/modules/index.php
There is a a recurring need for concise and accessible information to showcase the abilities and needs of children diagnosed with low incidence trisomy conditions. To this end, online modules have been developed providing historical background, relevant literature, overview of daily and medical care, and recommendations for monitoring key medical needs based on research and anecdotal reports. Additional family support information has been included along with examples of news articles. It is hoped these modules are shared with expectant parents, families with a child diagnosed with full trisomy 18 and full trisomy 13 and also with medical professionals and others caring for the child including therapists and teachers. To view and download modules please go to: http://tris.siu.edu/modules/index.phptris.siu.edu/modules/index.php
TRIS Survey
At the present time, several hundred families with children with trisomy 13 and 18 from around the world have completed one or more forms of the TRIS Survey. Since relatively little is known about trisomy 13 and trisomy 18, it is important to collect, analyze and disseminate as much information as possible. This information will help parents and various types of medical professionals to determine the best optimal of care for each child.
At the present time, several hundred families with children with trisomy 13 and 18 from around the world have completed one or more forms of the TRIS Survey. Since relatively little is known about trisomy 13 and trisomy 18, it is important to collect, analyze and disseminate as much information as possible. This information will help parents and various types of medical professionals to determine the best optimal of care for each child.
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How to participate
Please consider enrolling in the TRIS project and sharing information about your child (living as well as angels). Surveys are online so you will receive a log in and password to use throughout your participation in the project. You need not complete your survey at one time. You can save your work and return to it at a later date. Website is located at http://tris.siu.edu and enrollment form at http://tris.siu.edu/survey/form/PreEnroll.php For a paper copy, email tris@siu.edu |
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SUI poster 2013 with Emily Campbell
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Presentations and articles
Since 2007, TRIS project data has been shared in over 15 presentations to parents, perinatal nurses and clinical geneticists. Several conferences drew attendees from around the world. Also, 12 articles have been published in prominent peer-reviewed journals such as American Journal of Medical Genetics and International Journal of Developmental Disabilities. These presentations and articles would not be possible without parents completing surveys on behalf of their children. |
Debbie Bruns, Principal Investigator
Tracking Rare Incidence Syndromes (TRIS) project
Professor, Special Education program
Department of Counseling, Quantitative Methods and Special Education
Southern Illinois University Carbondale
Click here for Email: dabruns@siu.edu
TRIS Website - new homepage URL: http://tris.siu.edu
Facebook https://www.facebook.com/TRIS.Trisomy.project
PLEASE NOTE: The text and photographs on this website must not be reproduced or transmitted in any form without the written the permission of the copyright holder International Trisomy Alliance. The information provided on this website by International Trisomy Alliance is for general information purposes only, and whilst every attempt has been made to ensure the completeness, accuracy, reliability, and suitability of this information, neither International Trisomy Alliance nor the website hosts can accept liability for errors or any misinterpretation resulting from its use, and any reliance you place on such information is therefore strictly at your own risk. In no event will we be liable for any loss or damage whatsoever, including without limitation and indirect or consequential loss or damage, arising from the use of this website. June 2013 ©
Tracking Rare Incidence Syndromes (TRIS) project
Professor, Special Education program
Department of Counseling, Quantitative Methods and Special Education
Southern Illinois University Carbondale
Click here for Email: dabruns@siu.edu
TRIS Website - new homepage URL: http://tris.siu.edu
Facebook https://www.facebook.com/TRIS.Trisomy.project
PLEASE NOTE: The text and photographs on this website must not be reproduced or transmitted in any form without the written the permission of the copyright holder International Trisomy Alliance. The information provided on this website by International Trisomy Alliance is for general information purposes only, and whilst every attempt has been made to ensure the completeness, accuracy, reliability, and suitability of this information, neither International Trisomy Alliance nor the website hosts can accept liability for errors or any misinterpretation resulting from its use, and any reliance you place on such information is therefore strictly at your own risk. In no event will we be liable for any loss or damage whatsoever, including without limitation and indirect or consequential loss or damage, arising from the use of this website. June 2013 ©
