Electronic records, registries, and the development of big data : crowd-sourcing quality toward knowledge.

Despite many perceived advances in treatment over the past few decades, cancer continues to present a significant health burden, particularly to the aging US population. Forces including shrinking funding mechanisms, cost and quality concerns, as well as disappointing clinical outcomes have driven a surge of recent efforts into utilizing the technological innovation that has permeated other industries by leveraging large and complex data sets, so called big data. In this review, we will review some of the history of oncology data collection, including the earliest data registries, as well as explore the future directions of this new brand of research while highlighting some of the more recent and promising efforts to harness the power of the electronic health record and the multitude of data co-located there, in an effort to improve individualized cancer-related outcomes in rapid real time

Electronic records, registries, and the development of big data : crowd-sourcing quality toward knowledge.

Despite many perceived advances in treatment over the past few decades, cancer continues to present a significant health burden, particularly to the aging US population. Forces including shrinking funding mechanisms, cost and quality concerns, as well as disappointing clinical outcomes have driven a surge of recent efforts into utilizing the technological innovation that has permeated other industries by leveraging large and complex data sets, so called big data. In this review, we will review some of the history of oncology data collection, including the earliest data registries, as well as explore the future directions of this new brand of research while highlighting some of the more recent and promising efforts to harness the power of the electronic health record and the multitude of data co-located there, in an effort to improve individualized cancer-related outcomes in rapid real time

Society of Gynecologic Oncology Clinical Outcomes Registry: From small beginnings come great things.

OBJECTIVE: Clinical registries within medical societies have demonstrated the capacity to promote quality improvement. Opportunities for well-designed data repositories could yield reliable national standards for informing reimbursement, determining adherence to care guidelines, maintaining board certification, and developing bundled payment models. Looking to the future, we set out to develop a gynecologic cancer registry serving the members of the Society of Gynecologic Oncology (SGO). METHODS: The SGO Clinical Outcomes Registry (COR) initiated a web-based data entry platform as a foray into developing a functional registry, compiling data elements specific to gynecologic oncology. Endometrial and ovarian cancer patients began enrollment in early 2014. Within one year, 19 sites were participating with the addition of cervical cancer patients in January 2015. RESULTS: To date, \u3e6500 patients are currently entered from 29 sites, and the COR is being queried to address topics of quality improvement, disparities, and cancer outcomes. CONCLUSIONS: The SGO COR has proven the feasibility of developing a functional gynecologic cancer registry, with high uptake, rapid accrual, and ability to investigate topics of quality and outcome using the COR

Phase III Randomized Trial of Maintenance Taxanes Versus Surveillance in Women With Advanced Ovarian/Tubal/Peritoneal Cancer: A Gynecologic Oncology Group 0212:NRG Oncology Study.

Purpose: To compare taxane maintenance chemotherapy, paclitaxel (P) and paclitaxel poliglumex (PP), with surveillance (S) in women with ovarian, peritoneal, or fallopian tube (O/PC/FT) cancer who attained clinical complete response after first-line platinum-taxane therapy. Methods: Women diagnosed with O/PC/FT cancer who attained clinical complete response after first-line platinum-taxane-based chemotherapy were randomly allocated 1:1:1 to S or maintenance, P 135 mg/m2 once every 28 days for 12 cycles, or PP at the same dose and schedule. Overall survival (OS) was the primary efficacy end point. Results: Between March 2005 and January 2014, 1,157 individuals were enrolled. Grade 2 or worse GI adverse events were more frequent among those treated with taxane (PP: 20%, P: 27% v S: 11%). Grade 2 or worse neurologic adverse events occurred more often with taxane treatment (PP: 46%, P: 36% v S: 14%). At the fourth scheduled interim analysis, both taxane regimens passed the OS futility boundary and the Data Monitoring Committee approved an early release of results. With a median follow-up of 8.1 years, 653 deaths were reported; none were attributed to the study treatment. Median survival durations were 58.3, 56.8, and 60.0 months for S, P, and PP, respectively. Relative to S, the hazard of death for P was 1.091 (95% CI, 0.911 to 1.31; P = .343) and for PP, it was 1.033 (95% CI, 0.862 to 1.24; P = .725). The median times to first progression or death (PFS) were 13.4, 18.9, and 16.3 months for S, P, and PP, respectively. Hazard ratio = 0.801; 95% CI, 0.684 to 0.938; P = .006 for P and hazard ratio = 0.854; 95% CI, 0.729 to 1.00; P = .055 for PP. Conclusion: Maintenance therapy with P and PP did not improve OS among patients with newly diagnosed O/tubal/peritoneal cancer, but may modestly increase PFS. GI and neurologic toxicities were more frequent in the taxane treatment arms