ELGAN ECHO Study Overview and Results


Participants were 17 years of age

Study visits included collecting anthropometric measurements, lung function testing, and motor functioning activities. Participants were asked to provide saliva, blood, stool, hair, nail, urine, and previously shed baby teeth. Parents and caregivers participated in study visits by completing surveys, questionnaires, and tablet-based puzzles.


Participants were 18+ years of age

The 18-year study visit was a remote (online only) visit, where our teen study participants completed a short series of questionnaires about their health and well-being and interest in participating in future ELGAN studies.

The Importance of Microbiome Research

Learn what microbes are and why your participation in ELGAN ECHO is so important!

Wait! What is a microbiome? Take a Closer Look.

Learn about ECHO’s five areas of child health research.

See the types of information and specimens collected for ECHO.

What We’ve Learned From the Age 15-Year Study Visit

ELGAN’s original mission was to better understand the events before, during and after birth that influence the development of children born 3 or more months premature. Because of the steadfast involvement of study families, ELGAN has been able to put together a very big picture connecting these events – from early inflammation found in newborn blood spots, to school-age neurodevelopment, to high school health and activity.

Since infancy, ELGAN study participants have participated in neurological, developmental, and intellectual assessments. They have provided biological specimens and undergone MRI. Below we describe some of the ways we are using this information to answer some very important questions!

Ultrasound Imaging

During their first months in a neonatal intensive care unit (NICU), ultrasound is used to detect signs of brain damage in babies born extremely preterm. ELGAN investigators were interested in what these early ultrasound images may predict about a child’s later development. We looked at neurodevelopmental impairments in children who had 3 different ultrasound outcomes: 1) intraventricular hemorrhage (IVH), 2) brain white matter damage (WMD), and 3) neither IVH nor WMD. Our findings were reassuring, as children with IVH were not more likely to have neurodevelopmental impairments except for epilepsy (about twice as much as in other groups). Children with WMD, compared to children without WMD, were 3-4 times more likely to have intellectual deficit, but most children with WMD did not have intellectual deficit. Based on this study, neonatologists can convey to families that normal development is possible for their child even when early brain ultrasounds indicate IVH or WMD.

Neurodevelopmental Assessments

Because of the risks of neurodevelopmental impairment, extreme preemies are often tested in infancy with standardized assessments such as the Bayley Scales of Infant and Toddler Development and standardized neurological examinations. Based on these tests, about 40% of ELGAN study infants had at least one neurodevelopmental impairment at age 2. ELGAN investigators wondered whether impairments might resolve or become milder as ELGAN children grow older and receive nurturing from their families and educational services in their schools. To study this question, we compared how ELGAN children performed on standardized tests of development at ages 2 and 10. We were pleased to see that many children showed less impairment at age 10 than at age 2. To learn more about this study, click on the video at: https://publications.aap.org/pediatrics/article-abstract/147/5/e2020001040/180852/Changesin-Neurodevelopmental-Outcomes-From-Age-2?redirectedFrom=fulltext

MRI (Magnetic Resonance Imaging)

ELGAN pursued a methodical, close look at both brain growth and the organization and content of specific parts of the brain. Traditional MRI approaches and newly developed ways of handling the information from MRI studies were employed. These allowed us to look at the wiring patterns and chemical content of various parts of the brain. We expect that comparing brain images of children with different clinical outcomes will help us understand how some children do better than others even if they may have similar early life events.

The ELGAN MRI database is unique in the world. Through computer analyses, we’re learning that the developments of the extremely preterm brains are quite varied, likely much more so than in brains of full-term children. These brain variations present a wide spectrum of compositions, or sizes, or both. From a technical standpoint, we’re learning that MRI in general, and in particular the quantitative MRI used in ELGAN-ECHO, is a very useful and safe tool for monitoring the brain’s development at different ages. In the small subgroup from ELGAN that had MRI at both age 10 and 15, marked brain changes are seen. By monitoring such longitudinal changes, early signs of abnormality may be detected. We hope to pinpoint the causes of adverse development, and help physicians, researchers, and the pharmaceutical industries to develop new treatments to protect the brain. There’s much to learn from this unique MRI data, and by linking it to the non-imaging outcomes of the ELGAN-ECHO study.

Positive Health

Since people born extremely premature have a higher risk for chronic health conditions, much research has focused on adverse outcomes and alleviating suffering from disease. However, ELGAN has recently focused on positive child health to gain insights on well-being. Positive health reflects both the reduced presence of adverse outcomes or disease, and the extent to which individuals can adapt to environmental challenges, satisfy needs, and sustain physical, cognitive, and social-emotional well-being.

In the past couple years, ELGAN created a positive child health index (PCHI). Of 889 study children assessed at age 10, 32% had a PCHI of 100%, indicating the absence of all 11 adverse outcomes studied. At age 15, 40% of the 694 ELGANs assessed had PCHI of 100%. An even more exciting finding is that when comparing PCHI between the ages of 10 and 15 years, almost half (47.8) of our participants showed improvement in their health. Not surprisingly, our findings suggest that support from families contributes to PCHI improvement. We will continue this line of research so we can help children born extremely premature to thrive.