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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 - October 2014
As of October 1, 2014, 341 Full Surveys (children living at least two months; collection of baseline data) and 192 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 544 Follow-up Surveys were submitted (Year 1=182, Year 2=140, Year 3=102, Year 4=69, Year 5=33, Year 6=13 and Year 7=5).
In the past six months, an article focusing on 22 long-term survivors with trisomy 18 has been published in American Journal of Medical Genetics. Similar data on nine children with trisomy 13 has been accepted for publication. In addition, a manuscript with data on 25 children with trisomy 9 mosaic is under review (this is a follow-up to a similar investigation of 14 children which was published in 2011 in the American Journal of Medical Genetics). Case studies continue to be uploaded to http://www.coehs.siu.edu/tris/casestudies.html.
TRIS project data is continually compiled, analyzed and prepared for presentations and publications that are disseminated to other families as well as medical professionals including nurses and clinical geneticists. At present, cardiac surgery data for over 75 children with trisomy 18 is being analyzed for trends. In addition, developmental milestone data for the 22 children with trisomy 18 and nine children with trisomy 13 is being prepared for publication. Parent requests for data are also being completed and shared by email and social media such as incidence of autism spectrum disorder in children with trisomy 13 mosaic and partial trisomy 13.
TRIS project presented a session entitled, TRIS project findings: A resource for parents and professionals at the Support Organization for Trisomy 18, 13 and related disorders in July 2014. The session highlighted data analyses to date based on parent requests via email and Facebook posts. During the session, parents generated additional questions for analyses.
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 located at http://www.coehs.siu.edu/tris/pdfs/TRIS_Brochure_2013_Aug.pdf Paper copies are also available. Send a request to firstname.lastname@example.org including a postal address, number of copies and intended audience(s).
Additional information about the project is available by request. Please send an email to email@example.com with specific questions.
You can email us at firstname.lastname@example.org 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.