FAQs

Familial hypercholesterolemia (FH) is a genetic condition, which means it runs in families. FH causes high levels of cholesterol in the blood, especially a type called LDL cholesterol that is often called “bad” cholesterol.   

People with FH have a hard time getting rid of LDL cholesterol from their blood. As a result, the cholesterol builds up in the arteries, which can lead to heart attack, stroke, and blocked arteries (even at a young age). 

The ORIGIN-FH study is funded by Regeneron Pharmaceuticals, Inc, an American biotechnology company headquartered in New York state. The study received approval from the University of Wisconsin-Madison’s Institutional Review Board (IRB) on 11/7/2025 and was assigned an IRB number of 2025-1084. The IRB is a component of the University’s Human Research Protection Program and is accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP). 

We will provide you with an at-home kit to collect a dried blood spot sample that contains written instructions, blood specimen card, lancets, alcohol swabs, and a bandaid. The collection involves using the lancet to poke the skin (the heel in newborns) to allow a blood drop to form that will be placed onto the card. Once dry, you will mail the card back to us in the prepaid envelope provided. In addition to the written instructions, we have a video you can watch below, or you can contact study staff to request video visit support during the collection.

A study team member who is a certified genetic counselor will call you with results of the genetic tests. Study staff will meet with you after each blood sample for cholesterol levels to discuss results. These meetings can be done via phone call or video visit. 

No, you will not have to pay any costs related to genetic or blood testing for use in this study.