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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 May 2014 issue includes an article featuring Emily Campbell, Undergraduate Assistant with the TRIS project (fall 2012-spring 2014). 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 2015
As of April 30, 2015 353 Full Surveys (at least two months of age survey completion; collection of baseline data) and 196 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, over 600 Follow-up Surveys were completed and submitted (Year 1=206, Year 2=149, Year 3=112, Year 4=74, Year 5=39, Year 6=21, Year 7=9, and Year 8=4).
In the past six months, an article focusing on a sample of long-term survivors with trisomy 13 has been published in American Journal of Medical Genetics. An article describing data on 25 children with trisomy 9 mosaic has also been published in the same journal. In addition, an article describing developmental status of a sample of children under five years of age with trisomy 18 and a sample with trisomy 13 has been accepted for publication. A manuscript is also under review highlighting cardiac conditions and interventions for 84 children with trisomy 18. Case studies were completed in December 2014. All are available for download at http://www.coehs.siu.edu/tris/casestudies.html.
TRIS project data is continually compiled, analyzed and prepared for presentations and publications for families as well as medical professionals including nurses and clinical geneticists. At present, oral health and dental care data for approximately 100 children are being analyzed for trends. In addition, gestational age data as well as frequency of apnea and its treatment in trisomy 18 is being “data mined”. Parent requests for data are ongoing and shared by email and social media.
TRIS project will present a session at the Support Organization for Trisomy 18, 13 and related disorders Conference in July 2015 in Salt Lake City, Utah. A session has also been accepted for the International Society of Early Intervention Conference in June 2016 in Stockholm, Sweden.
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 email@example.com 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 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.