Sunday, August 14, 2011

Gathering Data for Study

The National Children’s Study is changing its approach to information gathering. The new approach termed facilitated decentralization will move away from proprietary informational systems to publicly available non-proprietary systems. The plan is to test a variety of different yet compatible information systems to identify the systems that best meet the needs of the study.

“The idea is also to identify and develop systems that can be adapted, upgraded, easily expanded to meet the changing needs of the study as it proceeds through the 21 year span,” said Capt. Steven Hirschfeld, M.D. U.S. Public Health Service and Acting Director for the National Children’s Study and Director of Clinical Research.

The National Children’s Study is going to examine the effects of the environment and genetics on the growth, development, and health of children across the U.S from pre-conception to age 21. The Study will be led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development part of NIH in collaboration with the National Institute of Environmental Health Sciences, Centers for Disease Control and Prevention, and the Environmental Protection Agency.

The study will be data-driven, evidence-based, and will provide information to help communities. Because of the study’s size, length, and complexity, the study will be conducted as two separate but related studies to include a pilot and a main study. The new components for the study’s informatics systems will be tested in the pilot study and will be used to help design the main study planned to begin mid 2012.

NIH Researchers are invited to learn more about opportunities to collaborate on the study and further details at a one day event on August 24, 2011 to be held at the NIH campus. Go to for more information. Go to for additional information on the National Children’s Study.