NIGMS Repository at Coriell Institute for Medical Research
Banking for the future by donating a blood or tissue sample to a cell repository is an investment that has the potential to greatly accelerate, improve and advance scientific research for Turner Syndrome. Watch the video to learn how to participate, and read frequently asked questions below. Request a sample blood & tissue donation kit by completing the form below.
Help build a research resource for scientists studying inherited genetic diseases! Contribute with a blood or tissue sample to the National Institute of General Medical Sciences Human Genetic Cell Repository at the Coriell Institute for Medical Research.
What is a cell repository?
A cell repository is a bank that specializes in storing cell lines. To create a cell line, our certified laboratories add a growth solution to either a blood or tissue sample. This growth solution contains the nutrients necessary so that each sample grows in a controlled and specific manner. This process is known as cell culturing. Once cultured, these cell lines can then be harvested, frozen, and stored so that it can later be distributed to the scientists in need of these resources. The NIGMS repository has optimized the processes of sample collection, quality assurance, sample maintenance, and distribution to provide high-quality cell lines to researchers around the world.
Why should I give a sample to the NIGMS Repository?
The donation of a blood or tissue sample to the NIGMS repository directly supports and makes research possible for Turner Syndrome. Samples in the NIGMS Repository have been used in over 5,000 scientific publications by researchers in more than 50 countries. By donating a sample, you provide scientists around the world with a unique opportunity to learn more about inherited, genetic diseases and the role certain mutations may play in the course of the disease. The lack of availability of human cell and tissue resources for scientists is a major barrier in finding treatments for genetic diseases. Testing candidate drugs or therapies using cells from individuals with genetic diseases can help scientists determine which approaches are most likely to work and be safe enough to test further in human clinical trials.
How do I submit a sample?
To give either a blood or biopsy (skin tissue) sample to the NIGMS Repository, you or your child must have an inherited genetic disease or chromosomal abnormality like Turner Syndrome:
- Complete the form below to inquire about eligibility and state that you would like a collection kit sent to you.
- Complete the informed consent, general submission, and clinical data summary forms.
- Have your blood drawn and/or skin biopsy performed by your physician.
- Use the pre-paid FedEx label to return the kit with your sample, paperwork, and copies of relevant medical records.
Is there any cost to submit a sample?
The NIGMS Repository pays for sample collection kits and shipping your sample to the repository. It is recommended that your sample be collected during a scheduled doctor’s visit. The NIGMS Repository is able to reimburse you up to $40 if you need to pay to have your blood drawn at an external site, such as Quest or LabCorp.
Will I receive results or information from my sample?
We are not able to tell you how your sample was used or who obtained materials made from your sample. Sample donors will not receive results of any testing performed on their sample or materials made from their sample. However, each donor is reminded to take advantage of the NIGMS back-to-submitter program, where a qualified clinician of your choice will receive 1 free cell line from the repository.
Will my information be kept private?
We take the privacy and confidentiality of each donor very seriously. Donor names and personally identifying information are removed from samples immediately and replaced with a code number instead. A Certificate of Confidentiality from the National Institutes of Health that prevents the Repository from being forced by federal, state, or local court orders to disclose your participation information without your consent. At any time, you can ask to have your sample and information removed from the repository completely.