The FH Foundation is a patient-centered nonprofit
organization dedicated to education, advocacy and
research of family high cholesterol. Its mission is to
raise awareness of FH and increase the rate of early
diagnosis and proactive treatment.
Through the Foundation, patients and healthcare
practitioners have joined together to change the status
quo for FH.
The CASCADE FH Registry™
The CASCADE FH Registry™ (CAscade
SCreening for Awareness and DEtection of Familial
Hypercholesterolemia) is a database where patients
with FH can register to help researchers collect data
on diagnosed individuals such as disease patterns,
trends and gaps in care. It helps patients contribute
to ongoing research as well as helping them track
their own health, including medications. They can
also view reports on how their own cholesterol levels
and therapies are changing. It’s free for patients to
register, confidential and secure (HIPAA-compliant
and HITRUST certified).
The FIND FH® (Find, Identify, Network,
and Deliver for Familial Hypercholesterolemia)
initiative uses advanced machine learning, natural
language processing and data mining techniques
to generate results on a heat map that shows the
national geographic distribution of individuals with
probable FH at the healthcare provider level. This
initiative is allowing healthcare providers in areas
with concentrations of individuals with probable FH
the opportunity to learn about patients with probable
FH in their practice.
ecent research reveals that
FH is twice as common in
the United States as previously
believed, affecting one in 250 adults.
Prior to this research it was
thought that FH affected about one
in 500 adults. But previous research
was conducted outside of the U.S.
and in less diverse populations.
The current study used data from 36,949 adults who
took part in the 1999-2012 National Health and Nutrition
Examination Survey (NHANES).
Among the findings:
• An estimated 834,500 U.S. adults may have FH;
• Men and women are affected equally;
• There are racial differences, with FH estimated to
affect one in 249 whites, one in 211 blacks, and one
in 414 Mexican-Americans.
“If you’re born with FH you have lifelong exposure to
high cholesterol, making your heart attack risk similar to
someone decades older,” said Sarah de Ferranti, M.D.,
M.P.H., lead author of the study, assistant professor of
pediatric cardiology at Harvard Medical School, and
director of preventive cardiology at Boston Children’s
Hospital in Massachusetts. “If you know that somebody
has had an early heart attack in your family, consider
asking for everyone to be checked.”
Dr. Sarah de Ferranti