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A Data-Driven Method for Generating Robust Symptom Onset Indicators in Huntington's Disease Registry Data.

A disease registry is an organized system that uses observational study methods to collect uniform data to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes[1]. Different from Electronic Health Record (EHR), whereas the research of understanding a particular disease belongs to the secondary use of data, the disease registries serve as a primary source to study the target disease. As a primary source, the registry data usually involves data generated from known and comprehensive clinical assessments for the target disease, and therefore a disease registry can be a powerful tool to observe the course of disease, to understand variations in treatment and outcomes, to examine factors that influence prognosis and quality of life, and to assess the clinical cost and quality of care.