Abstract

The compilation, retrieval, use, storage, and distribution of genotypic and phenotypic data associated with the collection, storage, processing, and distribution of biomaterials managed by biobanks is insatiable. Clinical trials, observational studies, and fundamental basic science research is “pre-qualifying” biomaterials sought and used in research based on the quality of data submitted with a biomaterial as well as the quantifiable data associated with its processing. Additionally, longitudinal designs to study the course of disease may require multiple specimen submissions tied with its time specific associated phenotypic data. Furthermore, significant attention is being given to defining “clinical data elements” or CDE's to assure that data with the most significant clinical relevance are collected at each time interval. Clearly, it is no trivial task to define a CDE and correlate its potential relevance to the research enterprise. This presentation will discuss how said data are collected, evaluated for its relevance (power), and how it is made available to the scientific community using the Coriell Personalised Medicine Collaborative and Coriell's biobanking models as case presentations.