Amgen, the Familial Hypercholesterolemia Foundation and Stanford Medicine announced the launch of the FIND (Flag, Identify, Network, Deliver) FH initiative. With financial support from Amgen, the FIND FH initiative is a large-scale programme to identify and engage individuals and families affected by familial hypercholesterolemia (FH). Familial hypercholesterolemia is an inherited condition caused by genetic mutations that leads to high levels of low-density lipoprotein cholesterol (LDL-C), or "bad" cholesterol, at an early age and premature cardiovascular disease. Familial hypercholesterolemia occurs in all populations and ethnic groups and affects 14 to 34 million people worldwide.
"Over 600,000 people in the US are estimated to have FH, though some research has shown this number could be approaching one and a half million. More than 90 per cent of those living with FH are not accurately diagnosed and therefore The FH Foundation is focussed on addressing this major gap in care," says Katherine Wilemon, founder and president of The FH Foundation. "FIND FH is a forward-thinking and groundbreaking initiative to identify individuals who are at profound risk of early and aggressive heart disease because they have FH, through the use of innovative technologies. Correct diagnosis is the substrate of optimal care and in the case of FH can help reduce the consequences of this condition."
Through the application of cutting-edge algorithms developed in partnership with globally recognised academic research centers, including Stanford Medicine, the multidimensional FIND FH initiative is designed to help healthcare providers identify individuals who have FH but who are undiagnosed, untreated or undertreated.
"There are currently few systematic approaches to identify patients with FH in the US, and it is unrealistic to expect most patients to recognise FH on their own, as it is a condition largely unknown to the general public," said Joshua W. Knowles, MD, FAHA, FACC, assistant professor of cardiovascular medicine at Stanford University School of Medicine and director of the FH clinic in Stanford's Center for Inherited Cardiovascular Disease. "We are hopeful that the FIND FH initiative can help identify and engage individuals and families affected by FH and potentially aid physicians."
Through the development of patient education materials, the FIND FH initiative aims to also educate patients about FH and provide guidance on how to screen their family members who may also be affected.
"The FIND FH initiative further demonstrates our commitment to reduce the global burden of cardiovascular disease as FH is one of the single largest genetic causes of atherosclerotic heart disease," says Sean E. Harper, MD, executive vice president of research and development at Amgen. "We believe the use of predictive modelling with objective clinical parameters can enhance the ability of healthcare providers to identify FH patients who are unaware of their condition."
FIND FH complements The FH Foundation's patient registry (CASCADE FH), the only established registry and database dedicated to the incidence of FH in the US Patients identified by FIND FH will have an opportunity to join the CASCADE FH registry, helping to improve data and understanding related to FH.
People can have one of two types of FH. Heterozygous FH (HeFH) is the more common type and occurs in approximately one in 200 to 500 people in the general population. It can cause LDL-C levels twice as high as normal (e.g., >190 mg/dL). Individuals with HeFH have one altered copy of a cholesterol-regulating gene. Homozygous FH (HoFH) is the rare and more severe form, occurring in approximately one in a million individuals.7 It can cause LDL-C levels more than six times as high as normal (e.g., 500-1,000 mg/dL). An individual with HoFH has two altered copies of cholesterol-regulating genes (one from each parent).