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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.
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 new issue includes an article featuring Emily Campbell, Undergraduate Assistant with the TRIS project since fall 2012. The issue also has an interview with Deborah Bruns, Principal Investigator of the TRIS project.
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 firstname.lastname@example.org with specific questions.
You can email us at email@example.com if you have questions. We look forward to hearing from 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.
- Support Organization for Trisomy 18, 13 and related disorders (SOFT)
Barb Van Herreweghe
- Noah's Never Ending Rainbow
- Hope for Trisomy 13 and 18
- Chromosome Disorder Outreach
|Living with Trisomy: TRISOMY SUPPORT,
Families Supporting Families
- Rainbows Down Under
- Living with Trisomy 13
- Rowan Tree Foundation
- Ironman for Kids Foundation
- Trisomy 9
- Support Organization for Trisomy 13/18 (SOFT) UK - (useful links)
You, too, can make an online, tax-deductible donation to TRIS.