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Tracking Rare Incidence Syndromes
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.
TRIS Survey results - September 2013
As of September 1, 2013, 273 Full Surveys (children living at least two months; collection of baseline data) and 180 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 437 Follow-up Surveys were submitted (Year 1=161, Year 2=120, Year 3=88, Year 4=48, Year 5=14 and Year 6=6).
The TRIS project provides a means to change perceptions about children with rare trisomy conditions. The data shows long-term survival, positive surgical outcomes and achievement of developmental milestones such as using gestures and vocalizations to communicate, walking (with or without assistance) and interacting with family members.
The focus of data analysis for the past year has been long-term survivors diagnosed with full trisomy 18 and full trisomy 13. One manuscript has been submitted for publication to the American Journal of Medical Genetics and several more manuscripts are in the process of being written. Several blog posts were also prepared for the Global Genes project (see http://globalgenes.org/?s=tracking+rare+incidence+syndromes+project). In addition, TRIS project staff has made several presentations to family support groups (t9 gathering in Northbrook, IL in June 2013, SOFT conference in Warwick, Rhode Island in July 2013). Debbie Bruns, Principal Investigator, has also presented with Sheryl Crosier (author, I’m Not a Syndrome — My Name Is Simon) to several nursing groups around the country (Delaware, Illinois and Missouri). Dr. Bruns also participated in a televised session on Trisomy Talk focusing on trisomy 18 (see http://trisomytalk.com/tris/).
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 your 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.