Advancing FH Care at NHLBI Workshop on Implementation Science and FH

Katherine Wilemon, Founder and CEO, Cat Davis Ahmed, Vice President of Policy and Outreach, and several Family Heart Foundation board members participated in a workshop convened by the National Heart Lung and Blood Institute (NHLBI) in November 2018. The goal of the workshop was to develop a multidisciplinary multilevel research agenda for late-stage translational research and implementation science in familial hypercholesterolemia (FH). Implementation science is the study of methods to promote the adoption and integration of evidence-based practices, interventions and policies into routine care.


This work is critical to the FH Community for several reasons. As outlined at the 2018 FH Global Summit which focused on implementation science, a tremendous gap exists today between evidence-based guidelines and clinical practice.


“It takes 17 years to turn 14 percent of original research to the benefit of patient care.”


By partnering with the NHLBI, CDC and leading research institutions to solve these challenges, the Family Heart Foundation continues to advance the identification and timely treatment of FH to prevent future generations from heart disease. Along with our global policy efforts, the Family Heart Foundation aims to ensure that FH is prioritized worldwide as a public health priority.



Key Workshop Highlights:


1. Katherine Wilemon presented on “Patient Engagement throughout the Lifecycle” highlighting individual FH stories and CASCADE FH Registry data that shows that diagnosis and treatment are too late.

Katherine Wilemon Patient Engagement NHLBI workshop on implementation science and familial hypercholesterolemia


CASCADE FH Registry data guidelines vs reality in FH care - implementation science


2. Dr. Joshua Knowles, Family Heart Foundation Chief Research Advisory, highlighted the opportunity for prevention with FH, and the need for family screening to ensure that all those affected are diagnosed.

FH disproportionately affects the risk of early heart disease


3. Participants agreed to publish a proceedings report to continue to drive public policy toward the prioritization of FH as a public health concern.

George Mensah recaps NHLBI implementation science workshop next steps on Twitter


the Family Heart Foundation will continue to work with several partners and institutions to conduct implementation science research. We look forward to updating you on our progress!

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