What is a registry?
A registry is a database (electronic record) where medical information, family history and other related information from patients is collected and stored for later retrieval and analysis.
Why do we need a registry?
Currently patients’ records are only in the hospital where they receive treatment.
The National FH Registry aims to get all FH patient records onto one database so that the information can be analysed to identify FH distribution, diagnosis and treatment effectiveness, cardiovascular disease levels and the impact of new treatments and interventions.
This will further the understanding of FH, aid health system planning and the development of the best treatment options and therefore improve patient care.
The National FH Registry will also provide equal opportunity to access the latest trials for new treatments for FH.
The National FH Registry will collect and process data according to Australian laws and best practices and ensure privacy of the data.
Once diagnosed with FH, patients including those who tested negative will be contacted to see if they wish to join the National FH Registry.
To join the National FH Registry :
- ask your FH doctor or genetic counsellor
- NSW email: RPAHGene.Clinic@sswahs.nsw.gov.au
- elsewhere in Australia or general enquiries email: firstname.lastname@example.org
National FH Registry newsletters:
National FH Registry newsletter – December 2021
National FH Registry newsletter – July 2021
National FH Registry newsletter – November 2018
National FH Registry newsletter – September 2018
National FH Registry newsletter – August 2017
National FH Registry newsletter – May 2017