CROSS-SECTIONAL SURVEY OF MULTI-CENTRE PATIENT REGISTRIES IN MALAYSIA

Abstract

Objective: This survey set out to describe patient registries available in the country, to determine their security features, data confidentiality, extent of outputs produced and data quality of the registries. Methods: A cross sectional survey was carried out via a self administered questionnaire. Results: There were 21 patient registries which covered important chronic diseases in health. There was a wide variety induration since development, size, numbers of centre reporting, funding source and outputs but not much difference in data security and patient confidentiality amongst the registries. There were impressive outputs seen (reports, presentations andjournal articles) and high quality data despite most registries being recently developed. Conclusion: The quality of registries in Malaysia is of high standard but its’ major benefits have yet to be realised.

Keywords

• Confidentiality
• databases
• data security
• registries.