Purpose

The purpose of the National Familial Hypercholesterolaemia Registry is to collate data to facilitate clinical service planning and to inform clinical best practice. The Registry will also enable research on aggregated data and the identification of eligible volunteers for clinical trials.

Objectives

To facilitate service planning by analyses and reporting of data collected by the Registry on prevalence, geographical distribution, genetic variants associated with disease, clinical features, clinical management and patient outcomes.

To enable research by providing aggregate, de-identified data to research entities.

To facilitate identification and recruitment of eligible volunteers for clinical trials.

To promulgate new knowledge to inform best practice and care services.

Administration and Oversight

The National Familial Hypercholesterolaemia Registry is governed by a National Advisory Board. The Board includes representatives from each jurisdiction from within the Familial Hypercholesterolaemia Australasia Network and will oversee all registry activities including all enquiries for access.

The Charter for the National Familial Hypercholesterolaemia Registry, the Registry Brochure and User Manual are available for your information.

Contact

For more information on the National Familial Hypercholesterolaemia Registry, please contact fhwa@health.wa.gov.au.

A sample consent form for patients wishing to participate in the registry can be viewed here.

Proudly supported by

Australian Atherosclerosis Society
FH Australasia Network
Centre for Comparative Genomics
Murdoch University

The National Familial Hypercholesterolaemia Registry is based on the Rare Disease Registry Framework. Authorised by Prof. Matthew Bellgard, Director, CCG.

Site updated: 16-02-2018