What do leaders of disease-specific advocacy organizations know about pharmacogenomics and biomarkers, anyway?

Disease Advocacy Organizations (DAOs) make meaningful contributions to the development of tests and therapeutics across the development pipeline, from cohort development to actual drug discovery. The process of developing biomarkers and validating them is fraught with a high failure rate and enormous expense. DAOs can harness new information technologies to increase effectiveness, including systems to dynamically consent individuals to participate in registries and trials. These new technologies can alleviate some of the expense in biomarker development. Information aggregation with consumer control of information at its core will eventually permit a national surveillance system for pre- and post-treatment analysis. A stronger and more scientific basis on which to build quality control and assurance of biomarker determination is needed. Validation must be supported in the future, in the same manner discovery was in the past, including through federal funding and philanthropic giving. DAOs can accelerate the process of biomarker development by building robust, well-characterized cohorts.