The FH Foundation's National Patient Registry Reveals How At-Risk the United States FH Population Remains for Premature Heart Disease
"Treatment Gaps in Adults with Heterozygous Familial Hypercholesterolemia in the United States: Data from the CASCADE FH™ Registry" is being published in the April 19th issue of Circulation: Cardiovascular Genetics.
PASADENA, Calif., April 19, 2016 /PRNewswire-USNewswire/ -- A common cause of early heart disease and heart attacks, Familial Hypercholesterolemia (FH) is a life-threatening, genetic condition impacting as many as 1 in 250 individuals worldwide. Those born with FH are at significant risk of developing premature coronary heart disease (CHD) due to the lifelong exposure to significantly elevated low-density lipoprotein cholesterol (LDL-C) levels. Although there are effective interventions available to manage FH and prevent CHD, FH remains undifferentiated, under-diagnosed and under-treated.
"The FH Foundation is committed to bringing real-world data to address the unmet needs of the familial hypercholesterolemia population in the United States. This study underlines the urgent need to proactively identify and treat this high-risk population." –Katherine Wilemon, Founder and President of the FH Foundation
The publication is a cross-sectional analysis of 1295 registry participants being seen at leading cardiovascular and lipid centers. The data demonstrate:
Initiation of lipid-lowering therapy and FH diagnosis is occurring at median ages 39 years and 47 years, respectively. FH is diagnosed late in life, too late for many people who already have heart disease when the diagnosis is made.
Individuals in the registry had 5-7 times higher prevalence of early CHD compared with the general population, with 47% of men with median age of onset of 47 years and 30% of women with median age of onset of 55 years.
FH patients often require therapies beyond statins with 45% of patients receiving more than one lipid-lowering therapy.
Among those on an LDL-lowering therapy, only 25% achieved an LDL-C level below 100 mg/dL; only 41% achieved the ACC/AHA guideline-recommended greater than or equal to 50% LDL-C reduction. The median treated LDL-C was still 134 mg/dL. There is a significant unmet need for LDL-C reduction with many patients requiring multiple medications.
"This first major paper from the FH Foundation's CASCADE FH™ Registry provides a snapshot of the contemporary experience of FH in the United States. The data echo emerging data from other parts of the world and demonstrate that we have a significant way to go to alleviate the burden of FH on patients and their families." – Joshua W. Knowles, MD, PhD, Assistant Professor of Medicine at Stanford University School of Medicine and Chief Medical Advisor to the FH Foundation
The CASCADE FH™ Registry, the only active national registry in the U.S., is a major initiative of the FH Foundation. It is a longitudinal observational study of individuals with all forms of FH. The registry includes physician-enrolled participants from over 25 leading cardiovascular centers in the U.S. and self-enrolled participants through a global online portal.
The FH Foundation is a 501(c)(3), patient-centered research and advocacy organization dedicated to increasing the rate of early diagnosis, encouraging proactive treatment, and improving the quality of life of all those impacted by familial hypercholesterolemia.
Sponsors of the CASCADE FH™ Registry are Aegerion, Amgen, AstraZeneca, Pfizer, and Sanofi Regeneron.