Dr. Nahid Turan, the Chief Biobanking Officer at the Coriell Institute for Medical Research has an interesting way of explaining what her organization does: “I just like to say we’re the Amazon.com of human DNA and cell lines.”
The Institute was founded in 1953 by Dr. Lewis L. Coriell, whose research contributed to clinical trials of polio prevention. Today, the non-profit is one of the world’s leading biobanks, housing several cell lines from the NIH, including the National Institute of General Medical Sciences Human Genetic Cell Repository. Supported largely by federal funding, the Institute provides laboratory and biobanking expertise to researchers and organizations around the world. And just like a customer shopping on Amazon, scientists are able to “shop” for cell lines on Coriell’s online catalog.
Those cell lines can become the basis of crucial research to better understand a rare disease, and can maybe even contribute to new drug discoveries. Samples from Coriell's catalog have been used in over 8,000 scientific publications by researchers in more than 50 countries.
But despite being well known within research circles, Turan still believes the families and patients that make up the bulk of the rare disease community don’t realize that they can bank their own genetic material at Coriell for free. All they need to do is reach out.
“This is a free resource to any family or foundation with a rare condition,” Turan said. “Reach out, because researchers could be using your cell lines, your stem cells, your DNA for free.”
Turan said it can be hard to get the message out to rare disease patients and their families because they’re often dealing with so many issues. Donating cell lines can easily fall down the list of priorities. “They’ve got so many different challenges,” Turan said. “But at some point, if they’re interested in research, they will recognize the importance of the need for biospecimens.”
The lack of access to available human cells is a big hurdle for scientists working on rare disease research. Being able to test new treatments on human cells is important in the drug discovery process because it helps scientists figure out which treatments will most likely be safe to test in humans.
So when researchers design studies to better understand certain diseases, Coriell often provides the cell lines that form the basis of that work. And though the Institute has one of the largest collection of rare disease cell lines in the world, Turan said she’s always looking to expand the Institute’s offerings.
“Our collection has over a thousand diseases, but there are 10,000 rare diseases out there and there are so many different mutations. So it’s rare that I’ll turn anyone away.”
Turan is not above marketing in order to increase awareness within the rare disease community. She’s created pamphlets, attends conferences, and has even started direct outreach with advocacy groups. “We're trying to spread awareness…I have a couple of people that are just going through different disease foundation email lists and contacting people to let them know,” Turan said. “For anyone out there that has rare, we want to talk to them.”
Here’s how it works: rare disease patients and their families can request a free collection kit from Coriell. The patient schedules an appointment with their doctor to collect blood and tissue samples. Coriell processes the donations to create stable cell lines that are then added to the Institute's catalogue. The lines are immortalized – or modified so that they can divide indefinitely in a lab – and kept at a cryogenic storage facility in Camden, New Jersey.
“For the most part, the cell lines can last forever,” Turan said. “We have lines that have been used for decades…50 or 60 years.”
Coriell is not the only biobank. Other institutions offer similar services, and biobanking is starting to become more common within the rare community. But Turan said it’s important for people to understand what happens to that material after a patient sends it in. “Sometimes the samples are not accessible. Sometimes the samples get trapped in some hospital biobank.” That’s not the case at Coriell. Because of the federal funding it receives, the cell lines stored at the Institute remain available for any scientists associated with a recognized research organization.
"We are a public biobank, so we’re used to disseminating these samples to the scientific community. In any given year, I’m distributing tens of thousands of samples to both pharma and industry and scientists," Turan said. “Why wouldn’t you store your material with us?"
For more information about how to donate biomaterials to Coriell’s Biobank, check out the Institute's donor guide.
