Seattle Children’s Sets Up Rare Biobank to Study Premature Birth

3/14/12Follow @xconomy

Money may be the key fuel that drives biomedical research, but even if you’ve got money, it’s hard to get very far without good tissue samples. Now a group at Seattle Children’s Hospital aims to tackle that problem by setting up an unusual biobank of specimens, open to scientists all over the world, which could become a gold mine for discoveries about premature birth and newborn health.

The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), an initiative of Seattle Children’s, said last week it has opened up a repository stocked with 8,000 specimens of blood, urine, vaginal swabs, placentas and cord blood from pregnant women around the Northwest. Unlike many biobanks, this one has its samples matched with information from patient questionnaires, which could help biologists understand the relationship between genetic processes and environmental exposures. And it’s expected to keep growing, as 800 new samples get added per month.

The biobank, supported with $2 million of philanthropy over the past three years, is being made open to researchers in academic institutions and companies with a variety of research questions, not just one specific idea to test, says Craig Rubens, the co-founder and executive director of GAPPS. The repository is one of the big initiatives of the GAPPS group, which received a $20 million donation last fall from the Bill & Melinda Gates Foundation. The overarching goal is to better understand what causes premature birth, in hopes of reducing this often disabling and costly result of pregnancy. About 3 million infants are born prematurely each year, and premature birth was estimated to cost $26.2 billion in the U.S. in 2005, according to data from the World Health Organization.

Craig Rubens, co-founder and executive director of GAPPS

“This is unique,” Rubens says. “We think this will become a magnet and resource for strengthening R&D into what happens during pregnancy to improve maternal health and newborn health and development.”

More than 10 different research organizations, including some for-profits, have inquired about access to the biobank before Seattle Children’s advertised it was open, Rubens says—but he wouldn’t name names. While there’s no commercial drug or device for reducing the odds of premature labor, there is increasing commercial interest in maternal health, particularly as companies like San Diego-based Sequenom (NASDAQ: SQNM) and Redwood City, CA-based Verinata Health have introduced maternal blood tests that look for DNA that tells whether a developing fetus has a chromosomal abnormality like Down syndrome.

Besides those applications, there’s broader interest in connecting the dots between what’s going on at the genetic level and the way traits are expressed in people—finding the connections between so-called genotype and phenotype. For example, scientists might like to know if pregnant women who have infectious diseases like the flu are any more likely to deliver prematurely. The samples get matched up with information on the individual donor’s medical and reproductive history, mental health, nutritional intake, and behaviors. Those things are often missing in biobanks, but can be found by matching up a blood sample with a patient questionnaire that asks about infectious diseases.

Part of the what’s unusual here, too, is that the biobank has samples not just from a single blood draw, but samples that track patients through time, from the first trimester of pregnancy through the post-partum period, as environmental conditions change.

Adriana Alejandro, a scientific consultant in Seattle who specializes in global health, says the new biobank could be a “tremendous” resource for researchers studying maternal and child health.

Collecting, curating, and maintaining such a biobank is an expensive and time-consuming task that few organizations are up to, Alejandro says. If it truly does share the samples widely in the scientific community, it could be a big boon to the field, she says.

“Let’s face it, not everyone can repeat this effort without massive funds, and the right equipment, storage, and trained personnel,” Alejandro says. “Having access to this wealth of samples could yield really in-depth answers in the many biomarker research labs located here in the state (and hopefully beyond the state of Washington).”

There were plenty of challenges in getting the biobank set up, beyond getting enough money. There were issues that needed to be dealt with on keeping personal information confidential, passing ethics board reviews, and setting up standard protocols for collecting, storing, and distributing samples, Rubens says. Any scientist can apply for access to the biobank, he says, although applications will need to pass ethics review panels, and a utilization committee that wants to ensure the biobank’s samples are being used appropriately, he says.

How big the biobank ultimately gets will depend on how much value scientists see in it, Rubens says. “As the demand grows, it will grow with it. The goal was to make flexible, to keep up with changes in the field,” he says.

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