GENinCode Plc, has announced a new partnership with The Family Heart Foundation, UT Southwestern Medical Center, and other US healthcare institutions. Their goal is to use the LIPID inCode® genetic test to improve the diagnosis of familial hypercholesterolemia (FH), a condition that leads to high cholesterol and increases the risk of heart disease. The test will be rolled out in primary and secondary care settings across the US, with the aim of catching FH early and helping families understand their genetic risk for heart disease.
This effort is part of the DISCOVER FH1 mission, which is backed by a grant from the US Department of Defense. DISCOVER FH1 focuses on early detection of FH through family screening, with a particular emphasis on reaching children and younger people who are often overlooked. The LIPID inCode® test will be used to help identify those with FH and trigger “cascade screening,” where family members of a person diagnosed with FH are tested to find others who may also be at risk. The idea is to catch the condition early and start treatment to lower cholesterol levels before more serious heart problems develop.
The program will be working with patients from UT Southwestern Medical Center and the Veteran Affairs (VA) North Texas Health Care System. After an individual is confirmed to have FH, the Family Heart Foundation will reach out to their at-risk family members to inform them about their potential genetic risk and help them get tested.
Katherine Wilemon, the founder and CEO of the Family Heart Foundation, said that this partnership could make it easier for people across the country to get tested and reduce the number of preventable heart attacks and strokes. “Cascade screening has proven to be a powerful way to catch FH early,” she said. “By expanding access to testing, we can help protect future generations from heart disease.”
Professor Zahid Ahmed, who leads the DISCOVER FH program, highlighted the benefits of the LIPID inCode® test, noting that it offers quick results and is cost-effective, making it easier to incorporate into routine healthcare.
FH is a genetic condition that affects about 1 in 250 people worldwide. People with FH have very high levels of “bad” cholesterol (LDL-C) from birth, which puts them at risk for serious heart problems at a young age. Without treatment, FH can lead to a buildup of cholesterol in the arteries, increasing the risk of heart attacks, strokes, and other cardiovascular issues. But with early detection and the right cholesterol-lowering medications, these risks can be greatly reduced.
Unfortunately, in the US, only about 30% of people with FH are diagnosed, despite efforts by public health agencies like the CDC to prioritize early detection and treatment. This leaves a large number of people unaware of their condition, and many families miss the opportunity to screen for FH after one family member is diagnosed.
The Family Heart Foundation hopes to fill this gap by helping families get the information and support they need, no matter where they live. The goal is to create a more coordinated and effective system for screening family members and getting them the treatment they need before serious heart issues arise.
The stakes are high. If left undiagnosed, FH can lead to premature heart attacks, surgeries, and even early death. These outcomes not only affect families but also strain the healthcare system, particularly because FH-related heart disease often affects younger people.
In the UK, a similar push is underway to reduce heart disease, with around 7.6 million people living with heart and circulatory problems. The National Health Service has made cardiovascular disease prevention a priority, and identifying people with FH is a key part of their strategy.
Matthew Walls, CEO of GENinCode, said the partnership with The Family Heart Foundation is an important step toward improving heart health. “This collaboration is part of our efforts to make LIPID inCode testing more widely available so that we can catch high-risk individuals early,” he said. “We’re committed to supporting the Family Heart Foundation’s mission to help families affected by FH and reduce the burden of heart disease.”