Project Summary

Familial hypercholesterolemia (FH) is a genetic disease of cholesterol metabolism characterized by very high levels of LDL cholesterol leading to highly premature fatal and nonfatal myocardial infarction and stroke. It affects one out of 200–500 individuals and 1.3 million people in the United States, but only 10 percent have been diagnosed. The University of Rochester has preventive cardiology/clinical lipidology programs (directed by Robert Block, MD, MPH) caring for patients with FH. Dr. Block and patients affected by FH have partnered for years with the FH Foundation, a national stakeholder focused on the diagnosis and preventive care of those affected. The University of Rochester also has a Department of Public Health Sciences containing many faculty (including Dr. Block and Scott McIntosh, PhD), students, and other staff whose goal is the conduct of research focused on enhancing population health. Patients with FH, Cat Davis Ahmed (outreach coordinator, FH Foundation), Drs. Block and McIntosh, and others with medical expertise regarding FH have formed a very active and team-based community via a Tier I project. In Tier II, they will recruit more affected patients, their family members, and stakeholders including media and other national organizations, along with those with clinical and research FH expertise. The trajectory will be a team-based, highly patient-, researcher-, and stakeholder-driven approach of generating specific future research project ideas from what was found in Tier I, including peer-supportive environments and communication pathways

View Tier I Award

Project Information

Robert C. Block, MD, MPH, FACP, FNLA
University of Rochester

Key Dates

12 months


Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 30, 2022