The Children’s Hospital of Philadelphia – also known as CHOP – is addressing a need that is 25 years in the making with a new research study focusing on the growth and development of children with Down Syndrome.   The study, which is funded by the Centers for Disease Control and Prevention (CDC), brings together experts from the Hospital in growth and nutrition, Down syndrome (also called trisomy 21), and general pediatrics to develop new growth charts for children and young adults with Down syndrome.

According to the National Down Syndrome Society:

Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.  There are more than 400,000 people living with Down syndrome in the United States.

Children with Down Syndrome tend to grow more slowly and are considerably shorter than most other children. Unfortunately, the current Down syndrome growth charts are outdated and may not reflect current patterns of growth in children and young adults with Down syndrome.  By revising the growth chart, the researchers expect to be able to improve the medical care of children and young adults with Down syndrome.

According to the grant’s principal investigator, Babette S. Zemel, Ph.D., director of the Nutrition and Growth Laboratory at The Children’s Hospital of Philadelphia:

“The past 20 years have seen significant improvements in the care of children with Down syndrome, accompanied by longer life expectancy.  We believe that children with Down syndrome are growing better now than they were 20 years ago. We also want to look at how they are growing throughout childhood, from infancy to young adulthood, at how body mass index changes across time, and how that relates to body fat composition.”

The study, called “Stand Up and Be Counted”, will work with 600 children with Down syndrome who are between the ages of birth to 20 years. Children who participate will be weighed, measured, and charted periodically throughout their childhood.  How often they are measured depends on their age.

The results of the 4-year study will be revised growth charts for children with Down syndrome, which will be widely distributed.  As well, researchers hope to identify common risk factors for growth-related problems and to create screening tools to help doctors identify children at risk for overweight and obesity, which are common concerns for adolescents and young adults with Down syndrome.

CHOP is still recruiting children with Down syndrome to participate in the study.  If you have a child with Down syndrome and live in the Philadelphia area, you can learn more about participation at: http://www.chop.edu/service/trisomy-21/our-research.html

References:

• Press Release: Nutrition Researchers to Develop New Growth Charts for Children With Down Syndrome
• CHOP: Down Syndrome (Trisomy 21)
• National Down Syndrome Society