What are neonatal dried blood spots?

Each year, millions of babies in the U.S. are routinely screened, using a few drops of blood from the newborn's heel, for certain genetic, endocrine, and metabolic disorders. These blood drops are put on a piece of filter paper, dried, and when the testing is done, many states store them. These are called neonatal dried blood spots. The CDC has more information on this Newborn Screening program here: http://www.cdc.gov/newbornscreening/

Will my results be kept confidential?

Yes. To help ensure confidentiality, the dried blood spots we receive will only be linked with your original ID at Brigham and Women's Hospital for conducting approved research. Only study staff requiring access to your information, i.e., the people who send you study-related emails, will have access to that information.

Can anyone get access to my child's neonatal blood spots?

Different states have different policies on the use of stored neonatal dried blood spots. Those that allow the dried blood spots to be used for research, only do so for research that has been approved by ethical committees and only with signed permission from the parent (if the child is a minor) or child.

Are you going to take my child's genes?

We do not have any immediate plans to analyze your child's genes, but we may do so in the future. If we do, we are bound by a strict ethics protocol to protect them. You are only identified by a confidential ID number, never by your actual name. You also have the option on the consent form to specifically not allow us to analyze for genes.

Will I have to pay for you to obtain the dried blood spot?

No. There is no cost to you for allowing us to obtain your child's neonatal dried blood spot.

Will I receive the results of this study?

We cannot anticipate in advance whose samples will be relevant for particular analyses, and because we are using research, not clinical, assays, we cannot provide individual results to participants. However, we will continue to provide you with group results in our annual newsletter so that you are aware of study findings. <