This is the last hope offered to many patients in major research centers on cancer: Leave your tumor sequence, and maybe we can match it to a drug that will push the malignancy. But the reality is that even genomic analysis using only a small fraction of patients with cancer. "More often than not, we do not know what to do with information," said Charles Sawyers, a researcher at Memorial Sloan Kettering Cancer Center (MSKCC) in New York.
Now, several major US and European academic medical centers hope to change that by pooling data on the genomes of tumor patients and their clinical outcomes. The project, announced today by the American Association for Cancer Research (AACR) at a meeting in Boston, has a mouthful of an acronym: GENIE, meaning Genomics, Evidence, neoplasia, Information, Exchange. It is headed by Sawyers, who helped develop the drug against leukemia Gleevec, one of the targeted gene therapies most successful.
Sawyers said GENIE arose from conversations with colleagues in other cancer centers that collect tumor genetic data to a "staggering" levels. "He got up on us, despite the history of our tendency to be silos, we could benefit from a centralized data sharing operation," he said. So far, seven research centers signed, including MSKCC, the Dana-Farber Cancer Institute in Boston, Johns Hopkins University in Baltimore, Maryland, and three organizations in Canada and Europe. AACR set up $ 2 million for a pilot phase of two years to coordinate and store the data.
The centers tend to provide sequencing for cancer patients with advanced cancer whose spread. Usually they are not the sequencing of entire genomes of the tumor; instead, they sequence a set of known cancer genes, such as BRAF , which are often mutated in melanomas, and EGFR , which results in the growth of many lung tumors . Sequencing report, then usually goes to a board of experts that determines whether it points to a specific treatment. But though BRAF and EGFR Mutations can be targeted by drugs, the tumor often has that rare mutations whose role in cancer are not well understood.
In other cases, said Sawyer, a rarely seen mutation suggests a "very interesting hypothesis enticing is sought" in a research center, giving the patient a drug that was approved for another cancer . The problem, he explains, is that "the results of these individual decisions of independent patients are not in an organized way."
GENIE allow researchers to share these rare cases of treatment and reach figures they need to draw definitive conclusions. the project could also reveal mutations that influence the prognosis of a patient.
Working on legal agreements with each center to securely share data from medical records was not an easy task, Sawyers said. the leaders also decided not to develop a standard panel of genes and instead each center continue to use its own set sometimes to measure. They vary in size- MSKCC's is one of the largest with 410 genes, but most lists overlap, said Sawyers. All sequencing data come from laboratories that meet the quality standards required to use the data in clinical care.
Another challenge was finding how to give researchers who share their hard-earned data a chance to publish important findings. GENIE members will have 3 months after sequencing the tumor of a patient to submit the data to Sage Bionetworks, a nonprofit organization in Seattle, Washington, which compiles a database. For the next 6 months, the only institution able to contribute see more information about this patient in the database. For the next 6 months, it will be open to full consortium. Finally, patient data will be available to the wider research community.
So far, the register contains data on 17,000 patients and hopes to reach 100,000 within 5 years. Sawyers and hope it will only grow. "It's sort of the experience of the sociology of institutional collaboration," he said.
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