The autoinflammatory diseases alliance registry of monogenic autoinflammatory diseases

HIGHLIGHTS

SUMMARY

    Clinical research and orientate clinical trial design, improving both the management of patients and the overall healthcare system. According to the definition provided by the Agency for Healthcare Research and Quality, a registry is "an organized system that uses observational study methods to collect uniform data (clinical and other) 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". In this respect, it is now acknowledged that a circular flow of quality actions- governance, data source identification . . .

     

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