CASCADE FH™ Patient Registry
Reveals How At-Risk the United States FH Population Remains for Premature Heart Disease
"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, Stanford University School of Medicine 
Chief Medical Advisor, FH Foundation

The publication is a cross-sectional analysis of 1295 registry participants being seen at leading cardiovascular and lipid centers. 

The data demonstrates:
  • 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.  T he 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.

We gratefully acknowledge our CASCADE FH™ Registry Sponsors:

Foundation Partners

Registry Sponsors

"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 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 - Raising Awareness. Saving Lives.

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