The Familial Hypercholesterolemia Foundation

THE FH FOUNDATION IS A PATIENT-CENTERED NONPROFIT ORGANIZATION DEDICATED TO RESEARCH,

FIND FH - FLAG/IDENTIFY/NETWORK/DELIVER IS A NATIONAL PRECISION SCREENING INITIATIVE THAT UTILIZES MACHINE LEARNING, NATURAL LANGUAGE PROCESSING, AND DATA MINING TECHNIQUES TO IDENTIFY INDIVIDUALS WHOSE PROFILES ARE CONSISTENT WITH FH. FIND FH INCLUDES THE DEVELOPMENT, VALIDATION, AND IMPLEMENTATION OF DATA MODELS TO FLAG INDIVIDUALS WHO NEED TO BE SCREENED BY A CLINICIAN FOR A POSSIBLE FH DIAGNOSIS. THIS INITIATIVE DIRECTLY ADDRESSES THE FACT THAT MOST INDIVIDUALS WITH FH ARE CURRENTLY UNDIAGNOSED AND DO NOT HAVE THE OPPORTUNITY TO REDUCE THEIR RISK OF EARLY AND AGGRESSIVE CARDIOVASCULAR DISEASE. THE FIND FH MODEL SEARCHES HEALTHCARE ENCOUNTER DATA SETS INCLUDING LAB RESULTS, CLAIMS DATA, AND ELECTRONIC HEALTH RECORD SYSTEMS. WITH THE RESULTS, THE FAMILY HEART FOUNDATION IDENTIFIES HEALTHCARE PROVIDERS (HCPS) WITH PATIENTS WHO HAVE MEDICAL RECORDS CONTAINING KEY FEATURES CONSISTENT WITH AN INDIVIDUAL HAVING FH. NATIONALLY, FIND FH HAS IDENTIFIED OVER 1.3 MILLION INDIVIDUALS WITH PROFILES CONSISTENT WITH FH. THE FAMILY HEART FOUNDATION IS IMPLEMENTING HCP AND INDIVIDUAL ENGAGEMENT PRACTICES AT MULTIPLE MAJOR HEALTH SYSTEMS PARTICIPATING IN THE FLAG IDENTIFY NETWORK DELIVER COLLABORATIVE LEARNING NETWORK (FIND CLN). THESE LARGE-SCALE IMPLEMENTATION PROJECTS ARE DESIGNED TO REDUCE BARRIERS TO EVIDENCE-BASED CARE AND TO IMPROVE PATIENT OUTCOMES. AT EACH HEALTH SYSTEM, WE ENGAGE STAKEHOLDERS AND ACT AS A HUB FOR LEARNING ACROSS ROLES WITHIN THE HEALTH SYSTEM. THE FAMILY HEART FOUNDATION HAS IDENTIFIED AND ADDRESSED NUMEROUS BARRIERS AND FACILITATORS TO IMPLEMENTATION. THIS GROWING EXPERTISE POSITIONS US AS A LEADING ORGANIZATION TO IMPLEMENT FH PROGRAMS IN CLINICAL SETTINGS ACROSS THE US. IN THE FUTURE, THE FAMILY HEART FOUNDATION HOPES TO EXPAND OUR FIND EFFORTS TO IDENTIFY THOSE AT RISK FOR HIGH LIPOPROTEIN(A).

CASCADE FH REGISTRY - TO IMPROVE THE UNDERSTANDING OF THE STATE OF DIAGNOSIS, TREATMENT, AND OUTCOMES FOR FH IN THE UNITED STATES, IN 2013 THE FAMILY HEART FOUNDATION LAUNCHED A NATIONAL FH PATIENT REGISTRY, A KEY TOOL FOR FH RESEARCH. SINCE THEN, WE HAVE CONVENED A NETWORK OF OVER 40 LEADING CLINICAL SITES ACROSS THE US, ENROLLED OVER 6,000 INDIVIDUALS IN THE REGISTRY, WHO ARE FOLLOWED ANNUALLY. THE FAMILY HEART FOUNDATION, IN PARTNERSHIP WITH OUR PRINCIPAL INVESTIGATORS HAVE PUBLISHED 19 MANUSCRIPTS, ABSTRACTS, AND POSTERS, CONTRIBUTING TO THE EVIDENCE BASE FOR HEALTHCARE DECISION MAKING FOR FH AT THE PATIENT, HEALTHCARE PROVIDER, HEALTH SYSTEM, AND POLICY LEVELS. THE CASCADE SCREENING FOR AWARENESS AND DETECTION OF FAMILIAL HYPERCHOLESTEROLEMIA (CASCADE FH REGISTRY) COLLECTS COMPREHENSIVE LONGITUDINAL DATA ON ADULTS AND CHILDREN WITH DIAGNOSED FH, INCLUDING BASELINE AND FOLLOW-UP INFORMATION ON DEMOGRAPHICS, LABORATORY VALUES, TREATMENT, AND CLINICAL EVENTS. CASCADE FH REGISTRY RESEARCH HAS QUANTIFIED GAPS IN CARE, INCLUDING LATE DIAGNOSIS, DELAYED TREATMENT, DISPARITIES IN CARE, CARDIOVASCULAR OUTCOMES, AND FACTORS THAT CONTRIBUTE TO LDL GOAL ATTAINMENT AND TO CARDIOVASCULAR RISK. THIS IS THE ONLY LONGITUDINAL OBSERVATIONAL RESEARCH STUDY OF ITS KIND IN THE US.

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.