News Release

Adults with inherited high cholesterol are underdiagnosed and undertreated

Peer-Reviewed Publication

Minneapolis Heart Institute Foundation

MINNEAPOLIS, MN – March 30, 2014 – An estimated 1 in 500 people worldwide suffer from familial hypercholesterolaemia (FH), an inherited condition of extremely high cholesterol that is associated with premature heart disease and death. Despite this high prevalence, recent research funded by the Minneapolis Heart Institute Foundation (MHIF) confirms FH is underdiagnosed and undertreated. Thomas Knickelbine, MD, Preventive Cardiology Director at the Minneapolis Heart Institute at Abbott Northwestern Hospital, will present the results of research aimed at identifying just how prevalent FH underdiagnosis is at the American College of Cardiology (ACC) meeting in Washington, DC on March 30.

Dr. Knickelbine and a team of MHIF researchers analyzed the electronic health records (EHRs) of 391,166 consenting ambulatory patients seen at Allina Health locations between 2009 and 2012 to identify individuals who were at least 80% likely to have FH (determined by low-density lipoprotein [LDL or "bad" cholesterol"] levels and age). They discovered 841 patients (0.21% or 1 in ~465) who were likely to have FH — only 36 (4.3%) of them had been diagnosed with the condition. "Provider recognition of FH is extremely low," explains Dr. Knickelbine. "Our research shows we can effectively use EHR data to identify asymptomatic FH patients and improve early diagnosis and treatment of this high-risk condition."

In this large, ambulatory patient population, the researchers also found that FH was undertreated. Of the 841 patients likely to have FH, 64.8% were on statin medications, but an additional 25.8% were not currently on a statin nor were they reported to be statin intolerant. In addition, only about one fourth of the identified FH group had achieved their NCEP LDL goal, and only 31% had been seen by a cardiovascular (CV) specialist.

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About the Minneapolis Heart Institute Foundation

The Minneapolis Heart Institute Foundation is dedicated to improving people's lives through the highest quality cardiovascular research and education.

  • Scientific Innovation and Research — Publishing more than 120 peer-reviewed studies each year, MHIF is a recognized research leader in the broadest range of cardiovascular medicine. Each year, cardiologists and hospitals around the world adopt MHIF protocols to save lives and improve patient care.

  • Education and Outreach — Research shows that modifying specific health behaviors can significantly reduce the risk of developing heart disease. Through community programs, screenings and presentations, MHIF educates people of all walks of life about heart health. The goal of the Foundation's community outreach is to increase personal awareness of risk factors and provide the tools necessary to help people pursue heart- healthy lifestyles.

About the Minneapolis Heart Institute®

The Minneapolis Heart Institute® is recognized internationally as one of the world's leading providers of heart and vascular care. This state-of-the-art facility combines the finest in personalized patient care with sophisticated technology in a unique, family-oriented environment. The Institute's programs, a number of which are conducted in conjunction with Abbott Northwestern Hospital, address the full range of heart and vascular health needs: prevention, diagnosis, treatment and rehabilitation.


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