On August 24, 2011, the National Children’s Study (NCS) program office at the National Institutes of Health (NIH) held a special Research Day conference that was open to the public. As the study is very clearly linked to my occupational field in Health IT, I decided to attend to learn more about the NCS and why it is so important to the health and well-being of our future generations.
What is the National Children’s Study?
Conducted by the National Institute of Child Health and Human Development (NICHD), along with several other federal agencies and public and private organizations, the NCS will study how various environmental factors affect the health and development of our Nation’s children throughout their lives. Study data will be collected from more than 100,000 children and their families from the pre-pregnancy/prenatal stages of each mother until each subject child reaches the age of 21. Subjects representative of the various geographic, ethnic, and socioeconomic backgrounds in the United States will be actively recruited to the study (approximately 3,000 women and 1,000 babies/children are currently participating). The data produced will ultimately be linked to outcomes on childhood health and development, and insights gleaned from the NCS will be used to better inform public policy, shaping future public health priorities.
Study Factors and Known Challenges
As expected, recruitment and retention strategies for participants were among the critical topics of discussion at the Research Day conference. I also learned that the NCS is paying very close attention to the bioethical and legal issues surrounding the use and distribution of information provided by study participants. Being that the NCS is such a long-term, large-scale study involving both adults AND minor children, the NCS is bound to challenge the bioethics community on the policies and regulations governing participant consent. Currently, participation requires informed consent by all prospective mothers and, eventually, both the assent of the children at age seven, as well as the consent of the subject children once they reach the age of majority (currently age 18).
Environmental and health information to be collected includes variables such as diet, family dynamics, community/cultural influences, and genetics. Clearly, collection of such a wide array of data will be a challenging task both from data storage and analysis perspectives. The NCS will have to face obstacles in developing common terminology and data standardization measures to support both research techniques and data analysis methods. More, as the study evolves over the years, new information needs and/or new sampling standards may necessitate the collection of additional data types, and subsequent modifications to data processing and interpretation. One presentation in particular made an interesting analogy of the scale and operational complexity of the NCS to that of the Human Genome Project. I wonder, if in the same respects as the Human Genome Project, where the needs of the project drove the innovation of better, faster, DNA sequencers, if the NCS itself may ultimately drive innovation to more efficiently and effectively accomplish data-driven research efforts such as this one?
A Deeper Understanding of the Take-Aways, Personally and Professionally
After attending the National Children’s Study Research Day, I walked away with the understanding that this study is a very important--and quite complex--undertaking. I also realized that it is also quite relevant to me, not just professionally, but also personally. As a woman of child-bearing age, who also cares deeply about the health and well-being of the children of my friends and family, I better understand how a large-scale study such as this really provides for advancement opportunities of substance and improved pace of discovery. On a professional level, it will be very interesting to follow the study over time, and observe how it will lead to significant advances--some intended, and perhaps, some unexpected--in the integrated areas of bioethics, public health, and health information technology.
-Ellen Lengermann, 5AM Solutions