Count me in: A patient-driven research initiative to accelerate cancer research.
2018
e13501Background: A challenge in cancer research is the availability of tumor samples linked to clinical information. To address this, we worked with patients (pts) to develop patient-driven studies which empower pts to share samples and clinical data. These studies aim to generate a public database of clinical, genomic, and pt-reported data to accelerate discoveries and the development of new treatment strategies Methods: Pts register through a website and are sent an online consent form that asks permission to obtain and analyze medical records and samples. Pts mail in a saliva sample, used to extract germline DNA (gDNA), and a blood sample, used to extract cell free DNA (cfDNA). We contact pts' medical providers and obtain medical records and a portion of their stored tumor biopsies. Whole exome sequencing (WES) is performed on tumor DNA, gDNA, and cfNDA; RNA-seq is performed on tumor RNA. Clinically annotated genomic data are used to study specific pt cohorts and identify mechanisms of response/resist...
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