Have Your Samples
It can be difficult to locate and track quality samples within a biobank for a genomics study. Informatics technologies like virtual biobanks can make it easier to manage and share tissues. 5AM Solutions’ Biolocator software is an open-source solution to connect biobanks and researchers around the world, says Brent Gendleman, president and CEO.
The company was contracted by the State of Arizona to create a virtual repository for hospitals to deposit their inventory of data. Researchers could then review the inventory online, and take that information into consideration in writing their proposals, knowing exactly what samples are available and at what cost. Once requests for tissue are approved, the tissues themselves are tracked so that information about how it is being used in various research projects is available in the virtual record.
“This is one way that we can contribute to improving the visibility of the tissue and correlating data,” says Gendleman. “Ultimately, this could make the data itself as valuable as the tissue over time.”
The virtual biobank turns the biorepository model on its head. Instead of having samples archived at some central location, a virtual biobank can track samples at an unlimited number of locations. The samples never have to be moved or handled until they are needed. Some other biobank ideas have been based on centralized storage and processing, but these initiatives have not been popular with researchers or tissue banks, who tend to like keeping their samples close. By letting people share samples that they physically never let go of, a biobank lets scientists have their cake and eat it, too.
Rare-disease research benefits tremendously from large-scale biorepositories. Research institutions must cooperate in order to develop networks among biobanks. However, governance, ownership, and ethical standards must be developed before large-scale biobanking can succeed.
Liz Horn, Ph.D., director at Genetic Alliance, breaks down some of the issues of adapting a large-scale biorepository to the smaller and sometimes obscure realm of rare-disease research projects.
Genetic Alliance provides the infrastructure that allows patient advocacy groups to carry out research studies, says Dr. Horn. The Genetic Alliance Registry and BioBank is a centralized sample repository with clinical-data registry. It was founded in 2003 with the intent of providing infrastructure and customized solutions for disease advocacy organizations.
Genetic Alliance has protocols in place so that when a member organization joins, it can concentrate on building the resource within its community, Dr. Horn explains. “All of the back-end work is taken care of,” she says. “Many advocacy groups don’t necessarily have staff scientists. Or if they do, they don’t have the resources to re-create the wheel. They hit the ground running, and start building their collection.”
In very rare diseases, where there’s little research interest, this approach is a realistic way to develop a sample collection and a cohort. The disease group owns its own samples, and Genetic Alliance guides them in building the collection. These nontraditional research initiatives can be very important to the scientific community, and even if originated by nonscientists, the resources gathered can generate interest among scientists.
Sample collections include those for psoriasis, chronic fatigue syndrome, pseudoxanthoma elasticum, Joubert syndrome, hereditary angioedema, and inflammatory breast cancer.