The National Children’s Study (NCS), funded by the National Institute of Child Health, is the largest long-term study of child health and development ever undertaken. Ultimately, the study will examine the effects of the environment on 100,000 children, from pre-birth to 21 years, all across the United States. The study will define the environment in the broadest terms: natural, man-made, biological, chemical, social, behavioral, genetic, cultural, and geographic.
Why do the study now? The time is right because the environment in which children are born today is very different than in the past. Just as one example, we need to study how global warming might affect children’s health and development. We recognize a range of powerful influences on children’s health and see that new health problems have emerged over time. So, we need new answers to tough questions. These new answers can help shape health policies and practices that can improve health for children.
The priority themes of the NCS:
- A study of the physical, social cultural, behavioral, and chemical environments that affect children
- Involving children of diverse ethnicities and backgrounds (We are an increasingly diverse national of children; by 2050, ethnic and racial “minorities” will be in the majority)
- The first nationwide study to benefit from the human genome mapping
- Focusing on understanding the causes of obesity, injury, asthma, pregnancy-related outcomes, and developmental disorders like autism.
The NCS will examine a wide range of elements that influence health outcomes, ranging from socio economic status and family structure to household media use to exposure to specific household chemicals.
We know that various environmental factors can converge to affect children’s health and development, For example, we know that women who live near highways are exposed to poor air quality and, when pregnant, tend to have low birth weight babies. Similarly, we know that asthma is exacerbated by poor air quality.
We hope that the study will look at which environmental factors are most important in the occurrence or prevention of health problems—and show what characteristics of certain communities encourage children to thrive.
We believe that the breadth and scope of study has power to answer these questions.
Overview of NCS design:
Study sites are designed to represent all children and all ethnic groups. The national study will sample 4 million births in 3, 141 counties. There will be 105 locations, from which a selection of neighborhoods (study segments) will be made. All (or a sample of) study households within a neighborhood will be part of the study. Researchers will go door to door to engage participants, trying to identify women who are likely to become pregnant. Women are recruited for the study when they are pregnant, then the study will follow their children for the next 21 years.
The National Children’s Study of Georgia involves the following partners: DeKalb and Fayette Counties, Morehouse School of Medicine, Emory University School of Medicine and School of Public Health, and the Battelle consulting firm.
Although the NCS is national in scope, it recognizes the importance of community engagement. It is critical to have community partners such as local health departments, day care centers, hospitals, employers, faith communities, the media, and so on.
Autism: one of the tough questions
Autism is one example of issues that the NCS will address. There is so much we don’t know about autism, and we are hoping that the study will help us find answers to tough questions about autism. The great amount of media interest has highlighted some of these questions. For example, is there really an increased incidence in autism or just increased awareness? Is there a link between autism and vaccines? Are clues in the brain? Is there a link between infection and autism? Any link to premature births? What’s the best treatment? Behavioral therapy? Nutritional approaches?
There are things we do know about autism:
- It is part of a spectrum of disorders (Rett syndrome, Asperger syndrome, childhood integrative disorder) that now make up the most common set of developmental disorders in children, occurring in 1 of every 150 children.
- It is a complex, life-long biological disorder of development.
- It may be confused with other neuro-developmental conditions such as mental illness, and hearing problems (however, mandatory newborn screening helps identify and remediate hearing loss).
- Early and universal screening of all children for autism is now recommended for early identification and better treatment, education and lifetime outcomes. (The American Academy of Pediatrics came out with recommendations for universal screening in the fall of 2007).)
However, there’s still much that we don’t know about autism—these are the tough, unanswered questions:
- What causes autism?
- Why is incidence of autism increasing? (The incidence of reported autism has increased from 1 in 10,000 children in 1978 to 1 in 300 in 2006.)
- Is there an association between autism and vaccines? (So far, the answer is no, but parents continue to believe there is a connection, so we need to continue to examine the issue.)
- How do environmental factors influence autism? (Certain factors like retinoids, contained in some acne medications, may induce genetic mutations in susceptible mothers that cause autism-like symptoms.)
- What are the best treatments?
- What are the best predictors of good outcomes?
Specific questions to be explored by the NCS include:
- The role of genes and a potential genetic defect that might cause autism
- The role of infections during pregnancy and autism
- Interaction of environmental toxins and gene expression and autism, eg retinoids and the HOX gene
Health and economic benefits of the CHS
The hope is that the study will:
- Yield answers to questions about exposure during childhood to potential toxicants.
- Have the power to determine the absence of effects or benefit of exposures to various products
- Identify causal factors for a number of diseases and conditions with suspected environmental causes
- Allow us, because of the large sample size, to apply knowledge of the human genome to understand multi-factorial genetic conditions
- Identify factors of early life that contribute to later problems in adulthood, such as diabetes and cardiovascular disease
- Provide a national resource to answer future questions by using stored biological and environmental samples
- Provide an evidence base to develop health policy and practice
- Provide economic benefits (cost avoidance) and health improvements for all children.
The study will have several phases. “Vanguard” studies will begin in the fall of 2008 at eight centers. Another 22 centers are in the second-tier phase and will begin enrolling study participants in 2010. Between now and then, work will focus on identifying neighborhoods, engaging partners, and so on.
It will be important to identify and report information as the study is underway. And there is a commitment to delve more deeply into areas that offer promise.
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