DEVELOPING OYSTERS AND HARVESTING PEARLS FOR FUTURE GENERATIONS
For a nurse researcher, a data warehouse containing longitudinally measured variables related to childhood health, development, and outcomes is like finding the proverbial “Pearl of Great Price.” In 2000, the U.S. Children's Health Act authorized the development of an entity, through the National Institute of Child Health and Development and a consortium of federal agencies, which will create just such a “pearl.” The project, known as the National Children's Study Plan, will begin data collection next year and continue enrolling subjects through the year 2011. The projected sample will include approximately 100,000 children, who will be followed beginning in the prenatal period and continue through the age of 21. Why get excited about a project that was authorized six years ago, that will not begin data collection for another year, and that will not be completed until the year 2023? The aim and scope of the project alone merits serious consideration, as the importance of this study can be compared, in concept, to the longitudinal Nurses' Health Studies I and II, which generated 198 published research studies in the years 2003 through 2005 alone.
The primary aim of the project is to investigate the separate and combined effects of environmental exposures, including chemical, biological, physical, and psychosocial events, on pregnancy outcomes, child health and development, and precursors of adult disease. The project also will address gene–environment interactions. Data will begin to be collected from pregnant couples, couples who are planning to become pregnant, and women at risk for pregnancy, and it will continue through the pregnancy and until the conceived child reaches the age of 21. It is anticipated that at least 25% of the children in the study will have data associated with them prior to their conception and at least 90% will have data related to the last trimester of pregnancy.
There are a minimum of 15 in-person study visits planned for each child and at least quarterly telephone contacts. The coordinating center, which will provide research support and coordinate recruitment and data collection, and at least three Vanguard Centers, where in-person visits will be conducted, will be selected shortly. The in-person visits will allow for in-depth interviews, physical examination, and a collection of biological samples, such as blood, urine, nail clippings, and environmental sampling (such as air, paint, water, soil) of the home and, as the children grow, any setting in which they spend more than 30 hours/week.
As could be expected, many hypotheses have already been developed by Federal Advisory Committee Working Groups, and, perhaps readers of this journal have been invited to participate in these. A list of current hypotheses can be found at http://www.nationalchildrensstudy.gov/research/hypotheses. However, it is expected that this list will be a “work in progress” as new relationships among data are found, new hypotheses are generated, and perhaps old ones are not supported. It is imperative that pediatric nurse scientists carefully review these hypotheses and continue to monitor the development of this list. In addition, fully de-identified data sets will be made available at intervals to the public; however, nurse scientists will be able to request the use of data prior to public release by a request to the project's steering committee. Although several years away from first-data release, this data set holds promise for future data mining for years to come.
The next meeting of the National Children's Study Federal Advisory Committee will take place from May 31–June 1, 2006. In addition, the Study Assembly of the National Children's Study is the primary vehicle for sharing information about the project and is open to anyone interested in the design, conduct, and results of the study. Study assembly meetings are held at least every two years to allow opportunities for researchers to give feedback on various aspects of the study. To become a member and receive periodic updates, go to http://www.nationalchildrensstudy.gov/about/organization/study_assembly.cfm and complete the subscription form.