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 Connecting the Dots: How Computer Innovation Supports the National Children's Study (December 2009)

December 2009

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National Children’s Study in the News: Recent Media Coverage

The National Children’s Study continues to garner media attention.

The Jerusalem Post
- October 31, 2009
“Health Scan: Children’s Genetic Privacy Must be Protected”

Collegian
- October 28, 2009
“SDSU Joins National
Child Research”

Michigan State University News
- October 27, 2009
“MSU Extension Tapped
to Support H1N1 Flu
Vaccination Program”

Farming in the Shade
- October 23, 2009
“Pardon the Commercial Interruption”

Mount Olive Tribune
- October 22, 2009
“Big Sweep”

Drug Week
- October 18, 2009
“Research from University
of California Provides New
Data on Depression”

Obesity, Fitness and
Wellness Week

- October 17, 2009
“Research from University
of California Provides New
Data on Depression”

Environmental Health Perspectives
- October 10, 2009
“Using National and Local Extant Data to Characterize Environmental Exposures
in the National Children’s Study: Queens”

Sampson Independent
- October 8, 2009
“Duplin Commissioners
Get Update on National
Children’s Study”

Genetic Engineering & Biotechnology News
- October 6, 2009
“Keeping DNA ‘All in the Family’”

American Journal of
Public Health

- October 1, 2009
“The National Children’s Study: A Golden Opportunity to Advance the Health of Pregnant Women”

Westminister Herald
- October 1, 2009
“National Children’s Study Recruits Future County Moms”

 

IN THIS ISSUE:

Feature
- Connecting the Dots: How Computer Innovation Supports the National Children’s Study
Event Coverage
- EPA Leader Brings Children’s Environmental Health Back to the Global Stage
Good to Know
- New Research Links PCBs to Changes in Fetal Brain Tissue

Feature

Connecting the Dots: How Computer Innovation Supports the National Children’s Study

David Songco began his career at NASA, when President Kennedy challenged the nation to put a man on the moon. Today he is driven by a different scientific challenge—improving children’s health.

As the Chief Information Officer for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, David directs the Information Management System (IMS) for the National Children’s Study. His team of federal engineers and private partners, including Booz Allen Hamilton and Westat, built the Study’s intricate computer network. Over the next two decades, this system will be the Study’s communication artery supporting 105 locations around the country.

The complexity is staggering. Yet David says, “That is what energizes the team.”

Perhaps a startling assertion, but it points to a broader challenge—integrating massive amounts of data from multiple Centers to answer vital questions about children’s health.

It’s this opportunity that intrigues the Study’s top computer chief. As David explains, “My job is to connect the dots and help achieve the big picture.”

Photograph of David Songco, Chief Information Officer, NICHD

David Songco, Chief Information Officer, NICHD

Developing an Integrated System

Achieving the big picture requires a nimble technology strategy. Over the next 20 years, the IMS must adapt to new hypotheses, scientific instruments, protocols, and technologies. A common programming platform, rather than a highly customized system, helps ensure the needed flexibility.

“We use a mixture of commercial products that are based on common standards whenever we can,” says David. Rather than create one massive system, the IMS consists of many distinct modules that fit together into a cohesive whole.

“It’s easier to rewrite one module and it increases long term flexibility.”

It is easier, and more cost effective. Proprietary systems can be costly to upgrade. The IMS’s modular approach allows changes to be made to the system without dismantling the entire network, a key consideration for the Study’s long-term sustainability. Right now the IMS is focusing on data collection related to pregnancy and the first births, but it is prepared for changes as the participants grow older and the Study evolves.

“We will accommodate what happens down the road. The IMS is dynamic. It won’t be fully done until the Study is over.”

By that time about 40 remote Study Centers—managing 105 Study locations—will be fully integrated into the IMS. Each of these Study Centers, which are housed primarily in universities and hospitals, have their own information systems. The IMS must be self contained and co-exist in this multitude of IT platform configurations in order to collect and protect the Study’s wide variety of environmental and health data.

“We’ve gone to great lengths to make the system standard,” explains David. “When we want to make a change it needs to be homogenous and easy for all of the systems to upgrade.”

Ensuring Security

While the IMS seeks to be user-friendly and easily accessible, protecting the data is David’s primary concern.

“There’s a constant push and pull to make the system absolutely secure but user-focused and friendly at the same time. We err on the side of making it secure, even if it means it’s less user-friendly.”

David explains that the IMS uses a “defense and depth” approach that builds-in multiple layers of security to protect information. Study Centers collect and upload data using a two-factor authentication system. Local Centers then send encrypted data to a central Coordinating Center via a Virtual Private Network (VPN). A VPN securely connects the Study Centers and allows them to safely share information through the Internet, rather than needing to purchase private data transmission lines.

Once the Coordinating Center receives the data, it is again encrypted and stored behind multiple firewalls. Accessing this information requires authentication and authorization to ensure the right information is provided only to the right people.

Advances in internet security make this system possible. Not only are VPNs secure, they have vastly reduced costs. David estimates that if the Study leased dedicated transmission lines for each Center, the total costs would have increased tenfold. These savings help ensure that dollars are available for further innovation and data protection.

Developing Unique Solutions

One innovation the team proudly promotes is a lightweight Fujitsu computer Tablet. Each Study worker in the field carries this laptop-like device, which serves as a communication tool and data collection instrument. During home visits workers input information using a stylus pen and a touch screen, which can be held like a legal pad. If needed, the machine opens into a laptop computer with full keyboard and screen. This screen also swivels away from the data collector and towards the participants, which allows participants to privately enter sensitive information or to watch a video message.

Though lightweight and portable, the Tablets are extremely rugged. They must hold up as data collectors walk busy streets in Queens, New York or travel through extreme temperatures in South Dakota. All data is immediately encrypted as it’s entered, so only those with the proper authority can retrieve and view the information.

Bethany LeMiuex uses the Tablet during home visits for the Waukesha County Vanguard Center outside of Milwaukee, Wisconsin. She concurs that the Tablet protects personal information.

“Each home visit I do has a number code, so all of the information is stored and sent without the person’s name or address,” says Bethany.

“Plus, because it’s all electronic there is no paper to get lost.”

The Tablet also has another unexpected side benefit.

“It looks impressive in the field,” Bethany explains. “A lot of people comment on it. Use of a high tech instrument like the Tablet underscores the importance the Study places on collecting and securing its data.”

Assuring people that their personal information is safe is vital to encouraging their participation in the Study. Adults may take comfort in the Tablet’s security innovations, but it’s the kids who especially appreciate its unique design.

“If there are kids in the house, they always think it’s really cool.”

New Frontiers

As the Study matures, David looks forward to new opportunities. For instance, cloud computing is one potential horizon. Cloud computing uses the capacity of remote Internet servers for information processing. Rather than purchase extra servers that might not always be needed, the Study could dramatically scale up efforts only when necessary by tapping into these networks. David anticipates that the security of cloud computing will improve over the next few years and enable the Study to benefit from its cost savings and seamless computational capacity.

Similarly, security features on wireless networks are becoming much more robust. David predicts that soon the Study will be able to utilize this technology, a boon for field-based research. “We will do [wireless],” he asserts. “The question is will it be 2 years or 10 years. But the first thing they need to address is the security.”

David’s team constantly tracks new technologies and considers how they could help the Study more efficiently achieve its mission. David calls it connecting the dots. Others call it innovation.

Coming Full Circle

David’s eye for innovation was sparked 50 years ago with the NASA moon launch.

“It built a fire in me that I still have today,” he explains.

Now, as he nears 50 years of service with government science programs, he sees an opportunity to make even a greater impact through his work on the National Children’s Study.

“Although I’ve done hundreds of projects, in some small way I now feel like I’m giving back… The entire team is making a significant contribution to the next generation. How often do you get that opportunity?”

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Event Coverage

EPA Leader Brings Children’s Environmental Health Back to the Global Stage

Children’s environmental health took center stage at the G8 Environment Ministers Meeting in Syracuse, Italy. On April 24, 2009, Lisa P. Jackson, Administrator of the U.S. Environmental Protection Agency (EPA), addressed the global gathering and reiterated the nation’s commitment to protecting children’s health. Her remarks also emphasized the need for international collaboration to solve environmental challenges and the promise of research initiatives like the National Children’s Study.

Administrator Jackson began her speech on a personal note, by acknowledging her role as the top U.S. environmental policy maker, and her even more important role as a mother of two young boys. “My focus as a mother is their future,” she began. “Just as our collective focus must be the health and welfare of future generations—all over the globe.”

Her remarks noted the urgency of protecting children, whose rapid growth rates make them exceptionally vulnerable to environmental contaminants. Though the risks to children are great, Administrator Jackson recognized global efforts to protect them, including promising areas of research in Europe and Japan, and U.S. efforts to support programs and science to address these risks. She made particular note of the importance of the National Children’s Study by stating, “to expand our knowledge of children’s health, our country this year started the most ambitious study of children’s health ever conducted in the United States.”

As nations continue to learn more, Administrator Jackson urged the Environment Ministers to find common solutions to eliminate or reduce children’s exposure to toxins such as lead, chemicals, contaminated water, and smoke from cook stoves.

Collaboration is critical, explains Martha Berger of the Office of Children’s Health Protection at EPA. “There are so many children’s environmental exposures. Global collaboration is crucial to understand them all.”

She notes that in addition to international research consortiums, nations often share their research methods and protocols. For instance, researchers from Japan have met with investigators at the National Children’s Study to help craft a similar investigation in their country.

Administrator Jackson’s speech wasn’t the first time children’s environmental health has occupied the G8 agenda. In 1997 global leaders agreed to establish new national policies and research programs. As Administrator Jackson noted, in the past 12 years much has been accomplished and current initiatives point to future progress.

The National Children’s Study is one example of this progress, but as Martha Berger points out, there are “many excellent longitudinal studies around the world.” Their combined knowledge holds the promise of ensuring children’s environmental health.

In her conclusion to the G8 Environment Ministers, Administrator Jackson sounded hopeful. “Our children’s future is so bright. But we must work in earnest to ensure their bright future is not overcast by the clouds of pollution, climate change, and other environmental degradation. The United States is committed to working with you to prevent that from occurring.”

To view a full text copy of Administrator Jackson’s speech, please visit the EPA Web site.

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Good to Know

New Research Links PCBs to Changes in Fetal Brain Tissue

It’s been 30 years since the U.S. banned PCBs, but their effects on children’s health are still being unraveled. PCBs, short for polychlorinated biphenyls, were once used in products such as plastics, flame retardants, and pesticides. The chemicals were outlawed when scientists identified them as a human and environmental threat.

Now a recent article in the Journal of the American Medical Association (JAMA)1 summarizes three new research studies on these toxic chemicals, conducted by scientists at the Oregon Health and Science University, the University of California, Davis, and the Harvard Medical School. These studies collectively provide greater insight into how PCBs affect fetal brain development.

Researchers concluded that fetal exposure to PCBs in rats:

  • Changed the rate of neural tissue growth and plasticity.2
  • Altered cells in the hippocampus region, an area of the brain implicated in developmental disorders.3
  • Interfered with the function of calcium channels in the brain, which may lead to overexcitation of nervous system circuits.4

Though banned since 1976, PCBs still linger in water, where they are consumed by small fish and microorganisms. Humans come into contact with PCBs through contaminated food and water, and even small amounts can add up over time. PCBs are stored in fat, where they can build to harmful levels.

The new research profiled in JAMA may explain how PCBs can affect fetal brain health and could point to areas for future exploration as scientists seek to understand the root causes of developmental diseases.

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1Mitka, M., PCBs and Brain Cells. 2009. JAMA. 2009;301(21):2202.

2Yang D, Kim KH, Phimister A, Bachstetter A, Ward T, Stackman R, et al. 2009. Developmental exposure to polychlorinated biphenyls (PCBs) interferes with experience-dependent dendritic plasticity and ryanodine receptor expression in weanling Rats. Env Health Perspect 117:426-435.

3Kyung HK, Inan S. Berman R, Pessah I. 2009. Excitatory and inhibitory synaptic transmission is differentially influenced by two ortho-substituted polychlorinated biphenyls in the hippocampal slice preparation. Toxicology and Applied Pharmacology 237: 168-177.

4Samsó M, Feng W, Pessah IN, Allen PD, 2009 Coordinated Movement of Cytoplasmic and Transmembrane Domains of RyR1 upon Gating.PLoS Biol 7(4):e1000085. doi:10.1371/journal.pbio.1000085

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Comments or Questions?

E-mail us if you have questions or comments
Visit our Web site at http://www.nationalchildrensstudy.gov

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

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health
Centers for Disease Control and Prevention
U.S. ENVIRONMENTAL PROTECTION AGENCY
  12/15/2009
  12/15/2009