International Journal of Medical Research & Health Sciences
  • Year: 2016
  • Volume: 5
  • Issue: 4

Good practices in the conduct of a patient registry

  • Author:
  • Manu Somanath, Anup Nair, Rituraj Mohanty, Uttam Barick, Arun Gowda, Anand Patil
  • Total Page Count: 5
  • Page Number: 22 to 26

Focus Scientific Research Centre (FSRC), part of phamax Analytic Resources Private Limited, #19 KMJ Ascend, 1st Cross, 17th C Main, 5th Block, Koramangala, Bangalore, Karnataka, India – 560095

*Corresponding e-mail: manu.somanath@fs-researchcenter.com

Online published on 29 September, 2018.

Abstract

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.

Keywords

Patient Registry, Case Control, Cohort, Cross-Sectional, Informed Consent Form (ICF), Case Report Form (CRF)