{"id":838,"date":"2015-11-27T12:45:00","date_gmt":"2015-11-27T01:45:00","guid":{"rendered":"https:\/\/www.athero.org.au\/fh\/fh-registry\/"},"modified":"2026-04-15T15:02:43","modified_gmt":"2026-04-15T05:02:43","slug":"fh-registry","status":"publish","type":"page","link":"https:\/\/www.athero.org.au\/fh\/patients\/fh-registry\/","title":{"rendered":"FH Registry"},"content":{"rendered":"

What is a registry?<\/h3>\n

A registry is a\u00a0database (electronic record) where medical information, family history and other related information from patients is collected and stored for later retrieval and analysis.<\/p>\n

Why do we need a registry?<\/h3>\n

Currently patient records are only in the hospital where they receive treatment.<\/p>\n

The\u00a0National FH Registry aims to get all FH patient records onto one database<\/b>\u00a0<\/span>so that the information\u00a0can be analysed to identify FH distribution, diagnosis and treatment effectiveness, cardiovascular disease levels and the impact of new treatments and interventions.<\/p>\n

This will further the understanding of FH, aid health system planning and the development of the best treatment options\u00a0and therefore improve patient care.<\/p>\n

The National FH Registry will also provide equal opportunity to access the latest trials for new treatments for FH.<\/p>\n

The National FH Registry will collect and process data according to Australian laws and best practices and ensure privacy of the data.<\/p>\n

Once diagnosed with FH, patients will be asked to see if they wish to join the National FH Registry.<\/p>\n

Where is the National FH Registry held?<\/h3>\n

The National FH Registry was created using the University of Western Australia\u2019s instance of REDCap (Research Electronic Data Capture (REDCap). REDCap is a secure, web-based, non-commercial, data management tool designed for research purposes. All confidential information will be encrypted and stored securely in accordance with the Privacy Act 1988 (Cth) and the Australian Privacy Principles. The National FH Registry uses cloud infrastructure located in Australia and all patient data collected in the registry will remain in Australia.<\/p>\n

To join the\u00a0National FH Registry :<\/h3>\n