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 National Children's Study Staff Meets with County Executives and Health Officials About Study Involvement (March 2005)

National Children's Study White Papers on the Web

To inform and develop methods for the Study, various literature reviews, analyses, and "white papers" have been produced and are now posted on the Web site. More will be added as they become available.

Upcoming Events

NCSAC Meeting

April 27-28, 2005, Crystal Gateway Marriott, Arlington, VA

Clinical Event Information Workshop

Date and Location: TBD

Good To Know

Autism May be Linked to Inflammation in the Brain

Autism is a neurode-velopmental disorder characterized by social dysfunction, language impairment, and the presence of unusual repetitive behaviors. This condition is of relatively unknown origin, however, genetic susceptibility has been clearly documented. Other areas of concern are exposure to mercury and inflammation in the brain. The autism research community is looking for etiologic clues, and a recent study from Johns Hopkins University1 may shed some light on the biology of the nervous system in individuals with autism.

Results show that certain brain cells associated with the central nervous system (microglia and astroglia) have a higher inflammatory response in individuals with autism than those without the diagnosis. In addition, cerebrospinal fluid showed an increased cytokine response in patients with autism compared to controls. This research supports the idea that inflammation of the nervous system may be a proposed mechanism for the development of autism in some patients,2 which may possibly be related to maternal antibodies as well.3

The National Children's Study intends to investigate how prenatal inflammation may be a risk factor for neurodevelopmental diseases such as autism and cerebral palsy. The mother's health will be tracked throughout her pregnancy for conditions such as fever and infection, and her blood and vaginal samples will be analyzed for measurements of immune system reactions. At birth, cord blood and placenta will also be collected for documentation of the child's immune reactions. Some of these biomarkers include lymphocytes, antibodies, cytokines/interleukins, and other inflammatory markers. Collection and analysis of this information by the National Children's Study will assist scientists and doctors in their quest to further understand and prevent autism in future generations.

1 Vargas DL, Nascimbene C, Krishnan C, Zimmerman AW, Pardo CA. Neuroglial activation and neuroinflammation in the brain of patients with autism. Annals of Neurology 2005; 57(1):67-81.

2 Licinio J, Alvarado I, Wong ML. Autoimmunity in autism. Molecular Psychiatry 2002; 7(4):329.

3 Dalton P, Deacon R, Blamire A, et al. Maternal neuronal antibodies associated with autism and a language disorder. Annals of Neurology 2003; 53(4):533-7.




National Children's Study Staff Meets with County Executives and Health Officials about Study Involvement

The National Children's Study staff held conference calls with county executives and health officials from among the designated Study Locations on December 15 and 16 to discuss the goals of the Study and the role county governments can play in its implementation. Peter Scheidt, MD, MPH, director of the National Children's Study, Sarah Keim, MA, study coordinator, and Jim Quackenboss, MS, environmental scientist at the National Exposure Research Laboratory, Environmental Protection Agency, gave an overview of the Study to approximately 130 county managers and fielded various questions about topics such as Study Location selection, participant recruitment, and the Requests For Proposals (RFPs) procurement process.

Study staff described several ways counties can be involved, including acting as an information resource within the community and helping engage the local media to reach the public with information about the Study. They also discussed how county health departments could apply to become Study Centers or work closely with the center once it is selected to help build community support and recruit participants.

County health officials asked about incentives for participants and how the Study would ensure diversity and examine special needs within their communities. Dr. Scheidt described how the Study will provide appropriate incentives to participants and, when necessary, will over-sample to capture the diversity of the Study site populations. The sampling strategy for the Study has been designed to recruit participants who will represent the demographic diversity of the entire United States.

Study staff also emphasized how counties will play a key role. "It's going to take efforts of all levels of government—federal, state, and local—as well as universities and schools, nonprofit organizations and foundations, industry, the medical community, and research communities to make the Study a success," said Ms. Keim.

Transcripts of these calls are posted at

Potential Economic Benefits of the National Children's Study

A study like the National Children's Study promises to offer tremendous benefits for our society in terms of lives saved and improved quality of life. But a research undertaking of this magnitude raises immediate economic questions. How much does a study of this size cost? What is the true "return on investment" in terms of the nation's health and economy?

A useful way to consider benefits of health research is in terms of "health care costs saved." A 1995 report from the Federation of American Societies of Experimental Biology Journal estimated that $68 billion in annual savings are attributable to medical research due to reduced or avoided hospital stays, new and improved advancements in medications, and medical procedures. The report concluded that for every research dollar invested, two to three dollars are returned to the economy.

Specific economic advantages of the National Children's Study can be viewed from the perspective of direct cost reduction. Five of the Study's major health outcome theme areas encompass diseases and conditions that currently create a societal burden of more than $758 billion per year. This figure is all the more troubling because it represents both treatment and intervention for conditions that research has shown can be mitigated and possibly prevented. A sustained research effort like the National Children's Study would greatly improve the understanding of these diseases and could stimulate innovative strategies to limit the impact of these conditions, ultimately reducing the nation's health care costs.

In addition to health care costs saved, an important but less quantifiable economic aspect is human potential realized due to optimal health. Healthier children have greater school attendance, learn better, and are more likely to grow up to be productive workers and family members. By generating findings that can help children grow into healthy and dynamic adult members of society, the National Children's Study will yield a valuable "return on investment."

This article is based on "Economic Investment in Health Research" from Growing Up Healthy: An Overview of the National Children's Study .

National Children's Study Sample Augmented to Ensure Rural Representation

Additional counties have been added to the National Children's Study sample to ensure that non-metropolitan or rural populations are proportionately represented in the Study. It was determined that in nine of the already announced non-metropolitan (rural) Study Locations, areas that roughly correspond to counties or clusters of counties, birth rates are too low to meet recruitment goals. Therefore, Study planners augmented the sample to ensure that non-metropolitan populations and issues are adequately represented.

As a first step, Study leaders added new counties to four existing Study Locations, choosing counties that are qualified for sample strata and are located adjacent to the already sampled counties. These included: Williamson, IL; Clearwater and Mahnomen, MN; Uinta, WY; and Brookings, SD (for a Vanguard site announced previously). However, for the remaining Study Locations, no qualified non-metropolitan adjacent counties were available, therefore, using the same sampling approach that was used to establish the previous non-metropolitan counties, the following new Study Locations were selected: Saline, KS; Marion, WV; Coahoma, MS; Beauregard and Vernon, LA; and Lamar, TX.

The number of Study Locations now totals 101, including 26 non-metropolitan areas. The map of Study Locations has been updated and the county governments of the new Study Locations have been notified. Any alterations in recruitment goals or roles of Study Centers will be addressed when the RFPs for the remaining Study Centers are announced. The goals and responsibilities of Vanguard Centers will not be affected by this augmentation of the sample.

Jessica Sapienza and Denise Dougherty Join the National Children's Study

Jessica Sapienza, MHS, has joined the National Children's Study as a committee liaison officer to assist the National Children's Study Federal Advisory Committee (NCSAC). The role of the NCSAC is to advise the director of the National Institute of Child Health and Human Development and the director of the National Children's Study. Ms. Sapienza recently completed a collaborative BA/MHS program in public health and environmental health science through Johns Hopkins University and the Johns Hopkins Bloomberg School of Public Health. Her coursework centered on children's health issues from infancy through adolescence and she has held positions in both health education and early child development. She also helped develop and pilot a leadership program for the Hopkins undergraduate community.

Ms. Sapienza will facilitate workflow between the NCSAC, the National Children's Study Program Office, and the Interagency Coordinating Committee. She has a strong interest in community involvement in research and will assist the NCSAC in this area. She became involved in the National Children's Study because of her interest in the social and behavioral aspects of children's environmental health. With the NCSAC, she will assist in evaluating pilot data relevant to the Study's protocol design.

Denise Dougherty, PhD, has joined the National Children's Study on detail for approximately one day a week from the Agency for Healthcare Research and Quality (AHRQ) at the Department of Health and Human Services where she is currently senior advisor for Child Health and Quality Improvement. Prior to joining the National Children's Study Program Office, Dr. Dougherty served as federal co-chair of the National Children's Study Health Services Working Group.

Dr. Dougherty will be drafting hypotheses on access to and quality of health care as well as identifying measures for gathering health services data in the Study. One such hypothesis may be whether or not children with asthma are receiving appropriate care as part of their routine health visits. Because health services for children are unlikely to be studied in randomized controlled trials, the National Children's Study will have a unique opportunity to learn more about the delivery and effectiveness of these services and how they vary across the country.

National Children's Study in the News

The National Children's Study continues to gain media attention. Recent news coverage has included:

U.S. News & World Report — February 12, 2005
Why Do Kids Get Sick?"

USA Weekend — January 30, 2005
"A Survey That Will Grow On You: The National Children's Study Will Follow 100,000 Kids from Before Birth to Age 21"

Chicago Sun-Times — February 14, 2005
"21 Years Will Be Spent Finding What Makes Kids Unhealthy"

St. Paul Pioneer Press — January 7, 2005
"Federal Project to be Largest U.S. Survey of Children's Health"

AAP News — January 2005
"Call to Consolidate Effort, Unify to Create an America Fit for Children"

Journal of the American Medical Association — December 20, 2004
"Panel Reviews Health Effects Data for Assisted Reproductive Technologies"

Injury Prevention — February 16, 2005
"Ability of Parents to Recall the Injuries of their Young Children"

County News (Newspaper of the National Association of Counties) — December 13, 2004
"New National Children's Study Largest Ever in U.S."

Salt Lake Tribune — December 20, 2004
"Salt Lake, Cache Part of 21 Year Children's Study"

St. Cloud Times — February 12, 2005
"Stearns Chosen for Health Analysis"

State-Journal Register — February 12, 2005
"Macoupin to Take Part in Health Study"

Herald Journal — February 4, 2005
"Cache to Play Part in Study"

Poughkeepsie Journal — January 2, 2005
"More Kids Chronically Ill: Study to Seek Explanation in Environmental Factors"

Eureka Reporter — January 3, 2005
"Humboldt County Selected as Site for National Children's Study"

Daily Telegram (Adrian, MI) — December 17, 2004
"Lenawee County Chosen for Child Health Study"

Healthcare Disparities Report — January 2005
"Study to Probe Environmental Factors"

Washington Update (Newsletter of the Consortium of Social Science Associations) — December 13, 2004
"Implementation of National Children's Study Begins"

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The National Children's Study is led by a
consortium of federal agency partners:

National Institutes of Health
Centers for Disease Control and Prevention