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NINDS/ Coriell Cell Repository

In addition to storing samples at Massachusetts General Hospital, if you agree, your de-identified blood sample and interview information will be sent to the National Institute of Neurological Disorders and Stroke (NINDS) Repository at Coriell. The Coriell Cell Repositories in Camden NJ collect, store and distribute cell lines, DNA samples and medical research information such as age, gender, diagnosis and other clinical information. Samples and research information are stored anonymously. This means that your sample and clinical information will not have any personally identifying information about you such as your name, date of birth, address, etc. Instead, everything will be coded with a unique identification number that cannot be traced back to you. The samples and accompanying clinical information may be shared with other scientists studying Tourette Syndrome, OCD, ADHD, as well as other kinds of disorders. These outside scientists will never have access to your name or any of your personally identifiable information.

Coriell will use your blood sample to make a cell line. Cell lines provide an ongoing supply of DNA for many years, without needing to keep re-drawing blood from the donor. The blood samples that we send to Coriell will be specially processed in order to separate the blood into its different parts. The white blood cells will be taken away and grown in a special solution. They are then frozen and stored at a very low temperature (minus 316 degrees Fahrenheit). This process allows the cells to be stored for decades or more and provide a continual supply of your DNA.

Your donated blood sample and a summary of your clinical information may be used for research about genetic factors. Your DNA will be made available, anonymously, through the Coriell repository to other researchers studying a variety of medical conditions. While your DNA may be used for research of Tourette Syndrome, OCD and ADHD, it may also be used for research of other diseases. The NINDS Repository at Coriell does not perform genetic testing services and therefore will not return genetic results to any individual research participant. Since other researchers will not know your identity, you will never receive any genetic information determined using your sample.