FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION
680 E Colorado Blvd No 180, Pasadena, CA 91101 www.thefhfoundation.org

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Organizations Filed Purposes: The Familial Hypercholesterolemia Foundation ("The FH Foundation") was incorporated February 17, 2012 as a California nonprofit corporation. The FH Foundation is a patient-centered nonprofit dedicated to education, advocacy, and research of familial hypercholesterolemia (FH). The mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds.

The FH Foundation is a patient-centered nonprofit organization dedicated to research,

CASCADE FH Registry - To address gaps in FH diagnosis and treatment, in 2013, the FH Foundation launched and now maintains a national FH patient registry. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) collects comprehensive longitudinal data on individuals with confirmed or suspected FH. The CASCADE FH Registry serves as a key instrument to support health service planning, increase knowledge on the disease, and pool data for epidemiological, clinical and outcomes research, as well as for therapy effectiveness. The CASCADE FH Registry employs an innovative hybrid design to maximize data collection: (A) data is collected from partnering clinical sites, and (B) patients can directly enter their data via a user-friendly patient portal hosted on the FH Foundation website. This dual-pathway enrollment design maximizes outreach and provides both the clinical and patient perspective. Data entered through both methods are secure and can be accessed through queries. Data includes baseline and follow-up information on demographics, laboratory values, treatment, and clinical events.

FIND FH - Flag/Identify/Network/Deliver - is a national initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH patients. FIND FH directly addresses the fact that an estimated 90% of patients with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. FIND FH includes the development, validation, and implementation of algorithms to flag individuals who need to be screened by a clinician for a possible FH diagnosis. The algorithms search healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, The FH Foundation identifies healthcare providers (HCPs) with patients who have medical records containing key features consistent with a person having FH and reaches out to those HCPs to help them find the patients to be screened.

FOCUS - FH Optimal Care in the US (FOCUS) creates and disseminates effective tools for patients, healthcare providers, policy makers, payers, and other partners to be used throughout the diagnosis, treatment, and long-term management phases of FH. FOCUS provides data-backed assistance utilizing clinical, economic, and humanistic outcomes to better inform the path forward. This work quantifies the challenges that individuals with FH have in gaining access to important new therapies. The FH Foundation addresses these challenges through data insights, awareness-raising efforts, educational tools (including the FOCUS Multimedia Toolkit and a mobile diagnostic app), and engagement of health plans and systems.

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