The dawn of collaborative research
Arizona Biomedical Research Commission strikes deal with 5AM Solutions to develop virtual tissue bank serving bioresearchers
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PHOENIX—Arizona biomedical researchers who have long found it difficult to share information about tissue samples with their collaborators will soon find their translational research burdens eased by an agreement between the Arizona Biomedical Research Commission (ABRC), a state-run research contract coordinator, and 5AM Solutions, a software developer for academic, government, commercial and non-profit life sciences organizations.
The agreement, announced in March, will establish a centralized, Web-based biological specimen tracking software system. The virtual tissue bank—the first of its kind in Arizona, will provide a single, consolidated view of the tissue samples stored in repositories in a number of Arizona hospitals and research facilities. The Web-based repository will not store the actual tissue samples, but it will include information about disease and other characteristics of the tissue donor.
Under the agreement, 5AM Solutions will customize, share and host caTissue Suite, a comprehensive, standards-driven, Web-based system for tissue inventory, tracking and annotation. Tissue data will be structured in a standardized format allowing researchers to easily browse and query the virtual collection to determine which samples may be suitable for their needs.
The virtual tissue bank will give researchers improved visibility of what tissue samples are available as well as access to a much larger number of samples which is critical in supporting their studies. It will also help facilitate research and foster greater collaboration, says James Matthews, deputy director of the ABRC.
"What we have been trying to do for the last four years is say to researchers, 'If you want to play, you need to be collaborative and multi-institutional,'" Matthews says. "A few years ago, the commission issued a detailed RFP for cancer drug discovery. What we learned from that was there are a lot of researchers working in labs by themselves, just doing their thing. Unless they know of someone to collaborate with, they are kind of lost. If you are trying to do a clinical trial with a drug and you don't know who else is out there who can help you and provide some of the services you need, it is a real slog. The next roadblock is pitching the clinical trial to someone who can help fund it. Our hope is that the virtual tissue bank's availability will take down some of those roadblocks."
Founded nearly six years ago on the principle that it would help usher in "the dawn of science and medicine" by evolving the way biomedical researchers work and collaborate using software, facilitating translational research and solving workflow challenges, 5AM Solutions was among the first organizations to be licensed by the National Cancer Institute (NCI) as a caBIG support service provider. caBIG was created by the NCI to facilitate data sharing and enhance collaboration between biomedical researchers through the use of a nationwide, interoperable IT infrastructure. caTissue Suite is an open source product from that program.
"We're leveraging the software from NCI to apply it to the needs of Arizona researchers," says Brent Gendleman, CEO and President of 5AM Solutions. "With this virtual tissue bank, the ABRC is addressing one of the most fundamental needs for making biomedical research a more efficient and productive enterprise. The caTissue Suite that we are customizing for the ABRC will help speed the pace of research and foster increased collaboration across a number of institutions. What most people do not realize is the critical role that tissues play in researching the cause of disease and how to prevent and treat it. The ability to collect, manage, and share standardized information about tissue samples is an absolute requirement for accelerating research and the development of new therapies."
In addition to easing translational research burdens and promoting greater collaboration across research groups, the virtual nature of the bank will also help protect the integrity of the tissues, as samples will remain in the repositories of the participating institutions rather than being shipped to a central repository. This will minimize transport and handling of the samples until they are needed by researchers, reducing damage that may occur during shipping.
Dr. Michael Berens, director of the Cancer and Cell Biology Division at the Translational Genomics Research Institute (TGen) in Phoenix, says the virtual tissue bank will ease collaboratively research burdens "enormously."
"This is a really empowering development for researchers in the state of Arizona," Berens says. "Arizona tends to be a very collaborative state, but I would say that our intentions to collaborate tend to be pregnant. For example, if I want to work together with someone at the University of Arizona or Good Samaritan Hospital, we all say, 'who has what samples?' Then we send each other our spreadsheets, which are all structured in a different way, and their databases are also set up in a completely different way than my database is set up. That enthusiasm we have about wanting to work together gets shackled by the challenge of finding out what resources are available."
Having a share portal that allows researchers to exchange information has additional benefits, Berens adds.
"Using the same tool that my colleagues are using, I can keep them apprised of what I am doing, and my collaborators can follow their samples and perform quality control," he explains. "This adds value back to their own lab, because people will spend more time looking at their own data, because other people outside of the organization are adding value to it. So there is a positive reinforcement outcome, as well."
Making the Arizona research community whole
One important factor that led ABRC to partner with 5AM Solutions was caTissue's ability to track tissue samples donated by the 22 Native American tribes in Arizona, says Matthews. The blood and tissue of indigenous people are especially prized by researchers because they tend to be homogenous, but many tribes have religious beliefs that require any tissue samples they donate to be tracked in such a way so that should the donor die, that tissue can be returned to the tribe, he explains.
The relationship between Arizona bioresearchers and the state's Native American community has been somewhat strained in recent years, and has been at the center of a contentious lawsuit that has meandered through the Arizona court system for the last decade. The lawsuit, filed by the Havasupai tribe who live in the village of Supai, Ariz., contends that Arizona State University and University of Arizona researchers misused blood samples taken from more than 200 tribal members for diabetes research in the 1990s by also using it for research into schizophrenia, inbreeding and ancient population migration.
Attorneys for the university system and individual researchers have argued that tribal members supplied the blood samples voluntarily and that there is legitimate public interest in data that can advance disease research, but the tribe claims the additional research was conducted without its permission and constituted an invasion of privacy. As a result, the tribe says, some members now fear seeking medical attention or participating in other research studies.
Calling the litigation "a horrible example of tissue donation gone wrong," Matthews explains, "Many Native Americans believe that when someone dies, they have to be buried whole in order to become one with the universe and earth. If their tissue is not returned and buried with them, they cannot return to Mother Earth. One of our requirements in issuing the RFP for this project was that the company needed to provide open source software that allows researchers to track what tissue is going out and coming back in order out of respect for our very large Native American population. 5AM Solutions understood that issue."
"It's unfortunate—researchers have a unique population of people they want to get to, but because of these past incidents, they are encountering resistance from the Native American community to participating in tissue donation. This is a trust issue, and where the open source aspect of the tool we are using is a huge benefit."
The agreement, announced in March, will establish a centralized, Web-based biological specimen tracking software system. The virtual tissue bank—the first of its kind in Arizona, will provide a single, consolidated view of the tissue samples stored in repositories in a number of Arizona hospitals and research facilities. The Web-based repository will not store the actual tissue samples, but it will include information about disease and other characteristics of the tissue donor.
Under the agreement, 5AM Solutions will customize, share and host caTissue Suite, a comprehensive, standards-driven, Web-based system for tissue inventory, tracking and annotation. Tissue data will be structured in a standardized format allowing researchers to easily browse and query the virtual collection to determine which samples may be suitable for their needs.
The virtual tissue bank will give researchers improved visibility of what tissue samples are available as well as access to a much larger number of samples which is critical in supporting their studies. It will also help facilitate research and foster greater collaboration, says James Matthews, deputy director of the ABRC.
"What we have been trying to do for the last four years is say to researchers, 'If you want to play, you need to be collaborative and multi-institutional,'" Matthews says. "A few years ago, the commission issued a detailed RFP for cancer drug discovery. What we learned from that was there are a lot of researchers working in labs by themselves, just doing their thing. Unless they know of someone to collaborate with, they are kind of lost. If you are trying to do a clinical trial with a drug and you don't know who else is out there who can help you and provide some of the services you need, it is a real slog. The next roadblock is pitching the clinical trial to someone who can help fund it. Our hope is that the virtual tissue bank's availability will take down some of those roadblocks."
Founded nearly six years ago on the principle that it would help usher in "the dawn of science and medicine" by evolving the way biomedical researchers work and collaborate using software, facilitating translational research and solving workflow challenges, 5AM Solutions was among the first organizations to be licensed by the National Cancer Institute (NCI) as a caBIG support service provider. caBIG was created by the NCI to facilitate data sharing and enhance collaboration between biomedical researchers through the use of a nationwide, interoperable IT infrastructure. caTissue Suite is an open source product from that program.
"We're leveraging the software from NCI to apply it to the needs of Arizona researchers," says Brent Gendleman, CEO and President of 5AM Solutions. "With this virtual tissue bank, the ABRC is addressing one of the most fundamental needs for making biomedical research a more efficient and productive enterprise. The caTissue Suite that we are customizing for the ABRC will help speed the pace of research and foster increased collaboration across a number of institutions. What most people do not realize is the critical role that tissues play in researching the cause of disease and how to prevent and treat it. The ability to collect, manage, and share standardized information about tissue samples is an absolute requirement for accelerating research and the development of new therapies."
In addition to easing translational research burdens and promoting greater collaboration across research groups, the virtual nature of the bank will also help protect the integrity of the tissues, as samples will remain in the repositories of the participating institutions rather than being shipped to a central repository. This will minimize transport and handling of the samples until they are needed by researchers, reducing damage that may occur during shipping.
Dr. Michael Berens, director of the Cancer and Cell Biology Division at the Translational Genomics Research Institute (TGen) in Phoenix, says the virtual tissue bank will ease collaboratively research burdens "enormously."
"This is a really empowering development for researchers in the state of Arizona," Berens says. "Arizona tends to be a very collaborative state, but I would say that our intentions to collaborate tend to be pregnant. For example, if I want to work together with someone at the University of Arizona or Good Samaritan Hospital, we all say, 'who has what samples?' Then we send each other our spreadsheets, which are all structured in a different way, and their databases are also set up in a completely different way than my database is set up. That enthusiasm we have about wanting to work together gets shackled by the challenge of finding out what resources are available."
Having a share portal that allows researchers to exchange information has additional benefits, Berens adds.
"Using the same tool that my colleagues are using, I can keep them apprised of what I am doing, and my collaborators can follow their samples and perform quality control," he explains. "This adds value back to their own lab, because people will spend more time looking at their own data, because other people outside of the organization are adding value to it. So there is a positive reinforcement outcome, as well."
Making the Arizona research community whole
One important factor that led ABRC to partner with 5AM Solutions was caTissue's ability to track tissue samples donated by the 22 Native American tribes in Arizona, says Matthews. The blood and tissue of indigenous people are especially prized by researchers because they tend to be homogenous, but many tribes have religious beliefs that require any tissue samples they donate to be tracked in such a way so that should the donor die, that tissue can be returned to the tribe, he explains.
The relationship between Arizona bioresearchers and the state's Native American community has been somewhat strained in recent years, and has been at the center of a contentious lawsuit that has meandered through the Arizona court system for the last decade. The lawsuit, filed by the Havasupai tribe who live in the village of Supai, Ariz., contends that Arizona State University and University of Arizona researchers misused blood samples taken from more than 200 tribal members for diabetes research in the 1990s by also using it for research into schizophrenia, inbreeding and ancient population migration.
Attorneys for the university system and individual researchers have argued that tribal members supplied the blood samples voluntarily and that there is legitimate public interest in data that can advance disease research, but the tribe claims the additional research was conducted without its permission and constituted an invasion of privacy. As a result, the tribe says, some members now fear seeking medical attention or participating in other research studies.
Calling the litigation "a horrible example of tissue donation gone wrong," Matthews explains, "Many Native Americans believe that when someone dies, they have to be buried whole in order to become one with the universe and earth. If their tissue is not returned and buried with them, they cannot return to Mother Earth. One of our requirements in issuing the RFP for this project was that the company needed to provide open source software that allows researchers to track what tissue is going out and coming back in order out of respect for our very large Native American population. 5AM Solutions understood that issue."
"It's unfortunate—researchers have a unique population of people they want to get to, but because of these past incidents, they are encountering resistance from the Native American community to participating in tissue donation. This is a trust issue, and where the open source aspect of the tool we are using is a huge benefit."
