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Tracking Rare Incidence Syndromes
College of Education and Human Services
TRIS Survey results (updated for 2012)
TRIS Survey results - September 2012
The Tracking Rare Incidence Syndromes (TRIS) project continues to grow!! At this time, approximately 500 families are enrolled in the project.
A combined total of 396 TRIS project surveys were completed during February 1, 2007 to September 1, 2012 including 238 Full Surveys (children living at least two months; collection of baseline data) and 158 Modified Surveys (infants living two months or less).
The largest trisomy group represented in the Full Survey was 64 children and adults with full trisomy 18 (27%). The next largest groups are full trisomy 13 (n=35, 15%) and trisomy 9 mosaic (n=19, 8%). Across all trisomy types, over 80% were living at the time of survey completion (n=197, 83%). The age range was two to 468 months (mean of 88 months). For the 41 children and adults who passed away (17%), age range was two to 290 months (mean of 58 months). Maternal age at child’s birth ranged from 17-45 years with a mean of 31.3 years.
Based on 158 completed Modified TRIS Survey, the largest group was comprised of 107 infants with full trisomy 13 (68%). The next largest group was full trisomy 18 (n=43, 27%). Approximately half of this group of infants were stillborn or passed away the day they were born (n=86, 54%) with a mean of nine days of survival. Maternal age at child’s birth ranged from 15-45 years with a mean of 31.4 years.
In addition, since February 1, 2008, 324 Follow-up Surveys were submitted (Year 1=137, Year 2=103, Year 3=58, Year 4=19, and Year 5=7). Follow-up Surveys are sent on the anniversary of initial completion of the Full TRIS Survey. Analyses are underway on overall health status, cardiac issues and sources of family support over time.
Please continue to spread the word and encourage parents, grandparents and guardians to share information about their child. 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.
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.
Additional information from the TRIS Surveys is available by request: send an email to email@example.com with your 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
|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.