National Children’s Study (NCS) Frequently Asked Questions for Participants


Letters from the Director of NICHD to Participants

The Director of NICHD sent this letter to all Vanguard Study participants, thanking them for their participation and letting them know the study is ending.

NCS Working Group Findings

Dr. Collins assembled a working group in 2014 in light of concerns raised about the Study by the National Academy of Sciences. On December 12, 2014, the working group released its findings.

On December 12, 2014, the NCS closed, following the advice of an expert review group and a decision from the NIH Director. As a result, the NCS immediately stopped all active data collection from participants.

The NIH would like to thank participants for their time and contributions to the study.

NIH is now working to make data collected by the NCS available to researchers, so that the study will be a valuable resource for years to come. Making the data available to researchers does not change the NIH’s commitment to protecting the privacy of all NCS participants.  

Below you will find answers to some frequently asked questions about the study’s closing. NIH will continue to update this website with new information. If you have additional questions, contact vanguard@ncs.nih.gov or call 1-877-865-2619.

Why did the study close?

The NIH Director asked a group of researchers to review plans for the study. After their review, the researchers determined that the study’s goals could not be met with the current plan. Therefore, the NIH Director decided to close the study.

Does that mean there will be no more study visits?

Correct. There will be no more study visits. If you had a visit scheduled for a future date, that visit is cancelled.

What do I need to do as a participant, now that the study has closed?

There is nothing that you as a participant need to do. NIH thanks you and every participant for your time and contributions to the study. Your involvement is greatly appreciated.

What happens to all of the collected information?

NIH will retain the information collected by the study and make it available for researchers to use in future studies. NIH remains committed to protecting the privacy of all study participants.

Will my study results be returned?

All results that can be returned have been returned to participants.

Could the study resume sometime in the future, or has it been closed permanently?

The study will not reopen. NIH values the original goals of the study and will look for new ways to achieve these goals.