A direct-to-patient approach has allowed the Metastatic Breast Cancer Project (MCBP) research study to identify nearly 3000 patients willing to provide medical records and tumor samples for analysis, according to research presented at the 2017 ASCO Annual Meeting (June 2-6, 2017; Chicago, IL).
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Respondents encompassed all 50 states, suggesting the feasibility of remote sample and record acquisition, according to Nikhil Wagle, MD, medical oncologist at Dana-Farber Cancer Institute (Boston, MA).
“Social media illustrates the power of patients to advocate for themselves and to drive research on their own,” one of the researchers told Journal of Clinical Pathways.
The MBCP uses social media to directly connect patients and researchers, and to encourage and empower metastatic breast cancer patients to use their experiences and medical data to aid in research.
Interested patients are sent a saliva kit and return a sample. Medical records and tumor samples are obtained through providers, and patients have the option of return a blood sample for cell-free DNA extraction. The researchers perform whole-exome sequencing to identify patient responses and therapeutic resistances in the population.
Data collected through the MBCP have been made available in public databases, and participants are regularly updated on the study’s progress.
Within the study’s first 12 months of recruitment, 2908 patients enrolled, representing all 50 states. Of these, 95% completed a 16-question survey detailing disease history and course of treatments, and 60% (n = 1730) completed consent forms. The researchers report continued enrollment of 100 to 200 patients per month.
The researchers have received saliva kits from 73% of enrollees (n = 1120). The patient population represents 992 unique treating institutions, 733 of which were reported by only one enrollee.
To date, medical records have been collected from 253 enrollees, 85 of whom had tumor samples available. Ninety perfect of available tumor samples (n = 79) have been successfully sequenced.
“Our project involves patients every step of the way. We provide the message and leave the decisions with the patients,” a researcher commented.—Cameron Kelsall
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