Abstract

Good practices in the conduct of a patient registry

Author(s):Manu Somanath, Anup Nair, Rituraj Mohanty, Uttam Barick, Arun Gowda and Anand Patil

A patient registry is defined as “a structured system that practices observational study methods to collect constant data (clinical and other) to evaluate detailed outcomes for a population defined by a particular disease, condition or exposure, and that serve one or more predetermined scientific, clinical, or policy purposes”[1]. The data derived from patient registries can provide a real-world view of clinical practice, patient outcomes, safety, and comparative effectiveness [2]. This article highlights the good practices that are essential to the design and conduct of patient registries. To provide a brief insight on the good practices to conduct patient registries. The key aspects to be considered when conducting a registry are accessibility, set up of the right research questions and maintaining the confidentiality and transparency of patient data. A patient registry must be conducted without affecting the ethical rights of the patients.

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