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Rare disease suffer from poorly organized or unfunded networks of researchers and clinicians. Define cross-platform minimal datasets for EMRs using collaborative grants for researchers and EMR companies
There are diverse diseases that share similar features. For example, many chronic airways diseases (chronic aspiration, ciliary dyskinesia, some COPD) "phenocopy" cystic fibrosis in terms of infectious agents, mucus clearance problems, progressive loss of lung function, etc. Use multiplatform "omics" approaches and Big Data bioinformatics to identify common nodes for therapeutic targeting. Other examples: emphysema and ...more »
Congress doesn't seem to "get it" regarding the return on investment for biomedical research, but maybe the public does. Create a mechanism whereby individuals can donate directly to the NIH to support research in specific areas (or provide general support).