In the News - 2009

September, 2009: Trisomy 18 and Trisomy 9 Survival Data

As of September 15, 2009, 153 Full TRIS Surveys were completed (children living longer than two months). Of the total, 50 children had a trisomy 18 variant (32.7%) including 34 full, nine mosaic, five partial, one tetrasomy and one isochromosome 18p. At the time of survey completion, 37 children were living (74%) (mean = 106 months, range two to 394 months). The remaining 13 survived between two to 258 months (mean = 64 months) (32%). 

Of the 124 completed Modified TRIS Surveys, 23% represented infants with trisomy 13 (n =28; all full). Eighteen (64.3%) were stillborn or passed away on the day of birth. The majority of the remaining infants survived for approximately 30 days or less (n = 8, range = 1 to 33).

Data representing 26 children or adults with a form of trisomy 9 is available on the TRIS Survey (n=153, 17%). This group represented nine individuals with trisomy 9 mosaic, 11 partial, and six with trisomy 9p only. In addition, five individuals with partial trisomy 9 also had an affected p arm. All are living with a range two to 468 months of age (mean=90 months). Only one infant with trisomy 9 mosaic is represented in the Modified Survey (n=124). The child passed away on the day of his birth in 1996.

August, 2009: Trisomy 13 survival data

As of August 1, 2009, 145 Full TRIS Surveys were completed (children living longer than two months). Of the total, 44 children had a type of trisomy 13 (30.3%) including 25 full, nine mosaic and 10 partial. At the time of survey completion, 30 children were living (68%) (mean = 100 months, range two to 405 months). The remaining 14 survived between two to 290 months (mean = 64 months) (32%).

The Modified TRIS Survey collects data on infants who survived less than 60 days. Of the 122 completed surveys, 74% represented infants with trisomy 13 (n = 90; 89 full, one mosaic). Close to half (43%) were stillborn or passed away during labor and delivery. The next largest group (n = 10) survived for three days post-birth.  

July 2009: Debbie Bruns and Katie Foerster presented two sessions at the July 2009 SOFT conference in Roanoke, VA. One described present common medical conditions of children with subtypes of trisomy 9 and the other provided TRIS project data about family supports. Thanks to all who attended!

Download the PowerPoints from these presentations:

• [T9 Data to Present: July 2009] 4.3MB
• [Family Support Data to Present - July 2009] 3.8MB

March 2009: Trisomy Awareness Month, Alaska.

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