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Shared Databases, Registries, and Metrics on Communication Disorders
Biomedical research is rapidly becoming data-intensive as scientists generate and use increasingly large, complex, multidimensional, and diverse datasets. The NIDCD ensures scientific rigor and reproducibility by establishing databases with common measures that encompass the human lifespan for hearing and balance; taste and smell; and voice, speech, and language research. The NIDCD will continue to support data sharing through the development and use of clinical registries, clinical data networks, and other forms of electronic health data to help healthcare providers make evidence-based decisions on best practice and thereby improve outcomes for individuals with communication disorders. The NIDCD is especially committed to developing and implementing infrastructure to identify: 1) investigators with expertise in epidemiology, data registry, clinical trials, and other clinical research and 2) academic- and community-based clinical practice settings with geographical, racial, and ethnic diversity to facilitate rigorous, cost-effective clinical research and maximize human subjects’ protection.
By establishing standard metrics in anatomical, acoustical, and physiological measures, researchers can better define functional communication abilities under real-world conditions. The NIDCD will support new and enhance existing centralized tissue and cell banks to aid access to biological source materials. Standard metrics and centralized tissue banks also help researchers to differentiate clinical subtypes and to identify early preclinical pathology. To improve communication among scientists and clinicians with different specialties, the NIDCD supports development of better measures of performance, communication abilities, disease-specific quality of life instruments, assessment of communication impairments, and outcomes of individuals with communication disorders.
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