siu logo

College of Education and Human Services

Tracking Rare Incidence Syndromes (TRIS)

Main Content Area

Tracking Rare Incidence Syndromes

College of Education and Human Services

New!TRIS Survey results (updated for 2011)

[Download PDF] [Download PDF - Table Format ]

TRIS Survey results - September 2011

A combined total of 361 surveys were completed during February 1, 2007 to September 1, 2011 including 211 baseline Full TRIS Surveys (children living at least two months) and 150 Modified (infants living two months or less). In addition, 237 Follow-up Surveys were submitted (Year 1=124, Year 2=74, Year 3=31 and Year 4=8). Follow-up Surveys are sent on the anniversary of initial completion of the Full TRIS Survey.

Full TRIS Survey overview

The 211 Full TRIS Surveys represented 79 with a type of trisomy 18, 57 trisomy 13 and 35 trisomy 9. The remaining completions included seven with trisomy 8, five with trisomy 14, six with trisomy 16 and four or less with other “rare rare” trisomy syndromes. Data below describes the largest groups represented in the TRIS database (trisomy 18, 13 and 9). Additional results are available upon request.

Trisomy 18

The trisomy 18 group included 57 with full trisomy 18, 12 with mosaic and seven with partial trisomy 18. Fifty-eight children and young adults (72%) were living at the time of survey completion. Mean age for full trisomy 18 was 84.8 months with a range from three to 394 months. The 16 who passed away ranged from two to 258 months. Mean age was 34.9 months. For trisomy 18 mosaic (n=11), mean age for survivors was 73.7 months (range four to 309 months) and partial trisomy 18 (n=6) mean was 81.2 months (range two to 223 months). One child with trisomy 18 mosaic passed away at 176 months and one with partial trisomy 18 at 143 months.

Trisomy 13

For individuals with a type of trisomy 13, 41 were still living at the time of survey completion (72%). Mean age for those with full trisomy 13 (n = 20) was 51.4 months (range 2 to 167 months). The nine children with trisomy 13 mosaic ranged between nine and 405 months with a mean of 115.9 months. Twelve children with partial trisomy 13 were also represented (M=151.8 months, range four to 326 months).

Sixteen children with trisomy 13 had passed away prior to survey completion (28%). This group represented 13 with full trisomy 13 (M=39.5 months, two to 168 months), one with trisomy 13 mosaic (seven months) and two with partial trisomy 13 (M=202 months, 114-290 months).

Trisomy 9

A total of 35 children and adults with trisomy 9 are part of the TRIS database. This includes 14 with trisomy 9 mosaic (M=78.6 months, two to 293 months), seven with partial trisomy 9 (M=117.7 months, two to 348 months), five with trisomy 9p (M=98.5 months, five to 468 months) and five with partial trisomy 9p (M=92.8 months, 28-219 months). One child with trisomy 9 mosaic passed away at nine months of age.

Modified TRIS Survey overview

Similar analyses were completed for the Modified TRIS Survey (infant survived less than two months) which was completed by 150 parents representing 39 infants with full trisomy 18 and 104 with full trisomy 13. The remaining seven infants included one with trisomy 13 mosaic, trisomy 9 mosaic and full trisomy 8.

Infants with full trisomy 18 included those who were stillborn and those who lived up to 62 days (M=9.9 days). Mean age was 9.3 days for infants with full trisomy 13 (range from stillborn to 60 days).

The information described here can be downloaded in Table form in the Results section of the website.

Please use the Pre-Enrollment request form to sign up to complete the TRIS Survey. If you have already started your survey, please click here to return to it.

You can email us at tris@siu.edu if you have questions. We look forward to hearing from you.

Thank 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.

Sponsors:

External Resources

Living with Trisomy: TRISOMY SUPPORT,
Families Supporting Families

You, too, can make an online, tax-deductible donation to TRIS.

Sidebar