FH in KIDS
Project overview
The FH in KIDS project is an ambitious Perth Children’s Hospital-led initiative to identify Western Australian children who are unknowingly at risk of an early heart attack.
Project background
What is Familial Hypercholesterolemia?
Familial Hypercholesterolaemia (FH) is the most common and serious cause of inherited high cholesterol. When undetected and untreated, FH leads to premature coronary artery disease, with half of all men and nearly a third of women suffering a fatal or non-fatal heart attack by the age of 60.
FH is a genetic condition that passes from one generation to the next and can be inherited by both men and women.
It affects approximately 1 in every 250 people. In Western Australia (WA), this equates to about 10,000 individuals, including 2,000 children.
Unfortunately, most people with FH do not know they have the condition, preventing them from accessing effective early treatment.
In Western Australia less than 3 per cent of children with FH are currently diagnosed.
Why is early diagnosis important?
Individuals with FH who are diagnosed and treated from a young age, can avoid developing coronary artery disease and expect to lead full lives with a normal life expectancy, emphasising the importance of early detection.
Project aims
The FH in KIDS Project is on a mission to change these statistics. We aim to identify up to 25 per cent of all children with FH in WA within 3 years.
Having an FH diagnosis will enable these children to access treatment early so they can manage their condition and prevent the cholesterol build-up that begins in childhood and leads to coronary artery disease in early adult life.
FH in KIDS is a collaboration between Perth Children’s Hospital (PCH) and Royal Perth Hospital.
It takes advantage of a National FH Registry enabling us to make contact with blood relatives of those individuals with FH living in WA so they can be tested for the condition.
Our team is also working closely with general practitioners to ensure that any child under the age of 18 years who is identified as part of this ‘cascade-screening’ process, is tested. Enhanced referral processes ensure that any child confirmed as having FH is offered a clinical assessment and ongoing management, either at PCH’s dedicated FH clinic, or with their general practitioner.
In anticipation of the increased numbers of children we expect to see with FH as a result of this project, we have expanded our clinic. We now employ Australia’s first paediatric FH Nurse Practitioner, whose expertise and skills will help us deliver timely, comprehensive, and family-focussed care, to children with FH and their families.
The vision of the FH in KIDS Project is to re-define FH as a treatable paediatric disorder.
Project researchers
Lead researcher
Dr Andrew Martin, Consultant Paediatrician
Research staff
Jemma Weidinger, Nurse Practitioner
Cherie Conroy, Clinical Nurse Specialist
Project staff
Christine Tawtel (Hendricks)
Funding partners
Perth Children’s Hospital Foundation and Telethon Kids Institute.
More information
- Genetic High Cholesterol in Families
- FH Australia – the national FH charity representing the voice of people with inherited high cholesterol
- Australian FH Paediatric Guidelines (2022)