ELGAN (Extremely Low Gestational Age Newborns)

The tiniest of babies making the biggest difference.

Each child enrolled in the ELGAN Study between 2002-2004 provides key information and holds an important piece of the puzzle that together will help us to learn what we can do to promote healthier and more content lives in those born very prematurely. Check out our progress over the years.

ELGAN Study

Participants were enrolled at birth and followed up until 2 years of age

Learn how the project got started and the important first steps of our research.

ELGAN 2 Study

Study visit at 10 years of age

Check out what we learned from the first and second phases of ELGAN.

ELGAN ECHO Study

Study visits during adolescence

We are in the midst of analyzing data in the adolescent life stage (15 years, 17 years and 18 years). Learn more about the ELGAN ECHO Study.

Join the advisory board

Join the ELGAN ECHO Participant and Family Advisory Board (EPFAB)!

Interested in helping to share the future of the ELGAN Echo study? Together with fellow board members, you will give thoughts and feedback about…

  • Future Research Questions
  • Improving the Participant Experience
  • Engaging & Supporting ELGANs

We will meet virtually once a month and you will receive a $50 Amazon gift card per meeting you attend.

Download the flyer to learn more and for contact information!

ECHO Phase 2 underway!

The ELGAN ECHO Study at the University of North Carolina at Chapel Hill has been renewed by the National Institutes of Health for an additional 7 years. For more information, email julie.rollins@unc.edu.

The ELGAN Study is conducted in three regions of the country: New England, North Carolina, and the Lake Michigan Area. There are 12 research sites within these three regions.

Find the hospital in your location and contact your local study coordinator.

View Locations

We Celebrate and Thank All of Our Participants

Check out stories from our participants, who have overcome huge adversities, and let’s celebrate all of their achievements during the past 21 years!

Tiana as an infant and a mother

Born extremely preterm and enrolled in the ELGAN Study (photo #1), Tiana is now the mother of a healthy, happy two year old (photo #2).

Olivia and Liz as infants and graduates from high school

“We were born 16 weeks prematurely with Olivia weighing in at 1.8 pounds and Liz, a mere 15 ounces. Our parents were not given much hope for us to survive with us being born so early and so tiny and then getting diagnosed with large brain bleeds, severe ROP, NEC, PDAs, and hearing loss. Fast forward 2 decades and here we are – graduating from high school! We still have some challenges but nothing we cannot overcome. We LOVE being a part of the ELGAN Study!”

Olivia and Liz Cummins

“Participating in the ELGAN Study since birth has given us gratification knowing that we are part of a team that can help make a difference …”

Kate & Megan H.

ELGAN Participants over the years.

“My involvement in ELGAN introduced me to the power of research, and I fell in love with the idea that I could work to expand the bounds of science and help others. I want to further the field of science and find new ways to help people with my work.“

Kaitlyn B.

“I try to live my best life by keeping a healthy weight, eating nutritious food, exercising, and not smoking.”

Danny S.

Halle as a baby and at prom

“I’ve been participating in ELGAN for many years so that doctors can learn how best to care for us as we get older.”

Halle P.

“I’m Bailey and I am currently a senior at NC State University studying Animal Science with plans of attending veterinary school next fall. I am so grateful to have the opportunity to participate in the ELGAN Study to help further research for other preterm babies. I have been so blessed to be as healthy as I am, and I hope my contributions in the ELGAN Study will help advance medicine so more kids will have outcomes like mine!”

Bailey

“My name is Ariel Grant and I was born a preemie , 1lb& 14oz. I have grown up to be very strong and a hard worker in the US NAVY. My favorite things to do currently are socialize with friends, journal, and read books.”

Ariel G.

Five teenagers socializing at school

The NIH selected ELGAN, along with similar studies in the United States, to join in a study of about 50,000 children to learn about Environmental influences on Child Health Outcomes (ECHO). Read more about ECHO.

Return of Results Participant Flyer July 2022
Return of Results Participant Flyer January 2023
Return of Results Participant Flyer July 2023
Return of Results Participant Flyer July 2023 (Spanish)
Return of Results Participant Flyer Fall 2024

About the ELGAN ECHO Study

ELGAN researchers have followed over one thousand children born at least 3 months early between 2002 and 2004 at 14 different hospitals in five states. We assessed these premature babies at birth, two, ten, and 15 years of age. We are in the midst of collecting and analyzing data collected when study participants are 17-21 years of age. Read more about the ELGAN ECHO Study.

Latest Updates

Join the ELGAN ECHO Participant and Family Advisory Board!

Rebecca Fry picked as EPA adviser

Download the ECHO Data-Driven Overview Infographic

17-year Visit Information Letter

18-year Visit Information Letter

COVID-19 Letter to Families

Studying Premature Babies to Understand Environmental Impacts on Children’s Health

Fry and O’Shea Awarded $20.5M NIH Grant to Study Environment and Children’s Health

Newsletters

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ELGAN Investigators Awards and Accolades

Jean Frazier headshot

Dr. Jean A. Frazier

ELGAN Site Principal Investigator at the University of Massachusetts Chan Medical School site

Dr. Frazier received the American Academy of Child and Adolescent Psychiatry (AACAP) 2023 Norbert and Charlotte Rieger Award for Scientific Achievement. This award recognizes the most outstanding scientific paper published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP) from July 2022 – June 2023. Our ELGAN article, “Psychiatric Outcomes, Functioning, and Participation in Extremely Low Gestational Age Newborns at Age 15 Years,” will be highlighted in the Editor’s column of JAACAP in the December 2023 issue of the Journal. Established in 1988, the award is supported by the Norbert and Charlotte Rieger Foundation.

Michael Msall headshot

Dr. Michael E. Msall

Site Principal Investigator at the University of Chicago ELGAN site

Dr. Msall received the 2023 C. Anderson Aldrich Award for Lifetime Achievement in Developmental and Behavioral Pediatrics. This award was given at the American Academy of Pediatrics National Conference and Exhibition Meeting in Washington DC on October 21,2023.  The American Academy of Pediatrics (AAP) Section on Developmental and Behavioral Pediatrics (SODBP) sponsored the award which recognizes a physician who has made outstanding contributions to the field of developmental and behavioral pediatrics based on national leadership, extensive scholarly activity, record of mentorship, and expertise. Dr. Msalls’ expertise includes  life-course outcomes, measuring function,  partnerships with families, and advocacy to promote supports that optimize resiliency for children with neurodevelopmental disabilities. This award was established in 1964 to honor Dr. Aldrich, a founder of the AAP, who made substantial contributions toward understanding infant feeding.

Dr. Anisha Gerber

Anisha Gerber, a pediatrician training in the subspecialty of pediatric kidney disease at the University of North Carolina, is analyzing the relationship between advanced cellular age in placenta and teenagers’ blood pressure using data from the ELGAN-ECHO Study. Remarkably, she has found that advanced aging in placenta is predictive of higher blood pressure in male participants in the ELGAN Study, but not in female participants. For this project she was mentored by Keia Sanderson, a pediatric kidney specialist at the University of North Carolina.

ELGAN