Information for Patients About the Repository

Help build a research resource for scientists studying inherited genetic diseases and chromosomal abnormalities: Donate a blood or tissue sample to the NIGMS Human Genetic Cell Repository at the Coriell Institute for Medical Research


What is a cell repository?
A cell repository is a bank that stores cell lines. The NIGMS Repository contains well-characterized, high quality cell lines for use in research. To make a cell line, human cells are taken from a blood or tissue sample and placed in a container with a growth solution. This process is called cell culturing. The cultured cells can then be "harvested," frozen, and stored. The medical and family history of the sample donor is also collected. Scientists can access banked cells and use them for a variety of purposes, including: finding new genes, studying how cells function, and developing new ways to diagnose, treat and possibly prevent genetic diseases.

Why should I donate a sample to the NIGMS Repository?
Donating a sample to the NIGMS Repository directly supports and makes research possible. Samples in the NIGMS Repository have been used in over 5,500 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 genetic diseases and how specific mutations influence the course of disease.

One of the key barriers to finding treatments or cures for rare, genetic diseases is the lack of available human cell and tissue resources for scientists to use to test potential drug compounds or gene- or cell-based therapies. Testing candidate drugs or therapies using cells from individuals with rare 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 donate a sample?
To donate your sample to the NIGMS Repository, you or your child must have an inherited genetic disease or chromosome abnormality. We are limited in the number of samples we can accept for each disease, so please contact us to inquire about eligibility.

  1. Request a sample collection kit by contacting Tara Schmidlen, MS, CGC at 856-757-4822 or tschmidl@coriell.org
  2. Complete the informed consent, submission form and clinical data summary form
  3. Have your blood drawn and/or skin biopsy performed by your physician
  4. Use the pre-paid FedEx label to return the kit with your sample, completed paperwork, and copies of relevant medical records

Is there any cost to donate a sample?
The NIGMS Repository pays for sample collection kits and shipping your sample(s) to the Repository. It is recommended that blood samples 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 a draw station, like Quest or LabCorp. The NIGMS Repository is not able to reimburse you for any costs associated with having a tissue biopsy. It is recommended that tissue biopsies be collected during a scheduled surgical procedure.

Will I get any results or information if I donate a 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.

Will my information be kept private?
We take the privacy and confidentiality of each donor very seriously. The following measures are in place to protect donor privacy:

  • Donor names and personally identifying information are removed from samples and replaced with a code number
  • No personally identifying information is given to recipients of materials made from donated samples
  • A Certificate of Confidentiality from the National Institutes of Health that prevents the Repository from being forced by federal, state or local court order to disclose your participation without your written consent

If you decide that you no longer wish to participate, you may contact the NIGMS Repository Genetic Counselor by phone (856-757-4822) or e-mail (NIGMS@coriell.org) and request that your remaining undistributed sample(s) and clinical information be withdrawn.

Questions?
Please contact: Tara Schmidlen, MS CGC, Genetic Counselor, at 856-757-4822 or tschmidl@coriell.org