First 1,000 Days of Life and Beyond
In 2012, ITMI launched the Longitudinal Childhood Genome Study (also known as the First 1,000 Days of Life and Beyond study) as a multigenerational study of 5,000 families, including grandparents, parents, children and other relatives.
The goal of the study is to generate more than 20,000 whole genomes with consent and first sample collection early in pregnancy and continuing through gestation to 18 years of age.
First 1,000 Days and Beyond Study at ITMI: Why participate
The Longitudinal Childhood Genomic Study identifies genomic, clinical, and environmental risk factors that may enhance our understanding of adverse health outcomes such as premature birth, asthma, obesity, and developmental disorders. In addition to genomic, clinical and environmental factors, this study seeks to understand the role of the human microbiome in immunity, health and disease.
While researchers are not solely focused on a specific disease, survey psychometrics have been developed to gather information that may be related to key childhood illnesses such as asthma, autism, diabetes, and obesity. Family health history, social history and medical history is integrated into the ancestral and genomic information from the families.
First 1,000 Days and Beyond Study at ITMI: What happens when enrolled
A variety of samples are collected from the family trio, parents and child during the first, second and third trimesters of pregnancy, at birth, and at regular intervals. Other family members such as grandparents, siblings, aunts and uncles may also participate.
Throughout the study, parents provide updated information about their child, including health status, immunizations, growth and development measures. They provide home and community information related to nutrition, the environment, potential toxin exposure from parental workplaces, psychological issues and more.
Families have remained active in the study completing surveys every 6 months for a survey response rate of 86 percent with a goal for families to stay in the study until these babies reach the age of 18.
The accrual rate is approximately 100 new families per month. ITMI has currently obtained, with appropriate consent, samples from over 2,300 families. In 2015 whole-genome sequencing was completed for more than 1,000 families. The current target enrollment has expanded from an initial goal of 2,500 to 5,000 families, which will generate trio-based sequence data on 15,000 individuals in these trios as well as approximately 5,000 additional genomes from other relatives, according to current participation rates of these other individuals.
The longitudinal approach allows ITMI to look at several aspects of neonatal well-being and childhood health and development in potentially high-yield areas such as improving the newborn screening process and exploring the role of pharmacogenomics in minimizing patient safety events.
To learn more about this study or inquire about enrolling, contact Kathi Huddleston, PhD, Director, Clinical Research, or call ITMI at 703-776-8199.