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Genomics can help to create personalized treatment plans for patients, as well as find serious hereditary diseases in families before problems get worse. Individuals can now help with the detection, prevention, and treatment of serious diseases by joining HerediGene: Population Study online at HerediGene.org.
HerediGene.org is the website allowing people to instantly sign up for this research project aiming to change healthcare now and for generations to come.
Brady Ulrich, from Idaho Falls, Idaho, lived his life unaware he had a potentially fatal heart issue. He knew he had always felt exhausted throughout his life. Then in 2016, while visiting Cedar City, Utah, had to be rushed to a hospital emergency room. He found out that not only was he having heart problems that he did not know he had, but that he was in heart failure from a genetic disorder.
Ulrich’s problems got worse as September 11, 2018 he had to be lifeflighted to Intermountain Medical Center in Salt Lake City where he underwent open heart surgery and received an artificial heart pump.
His life changed on Easter 2019 when he got the call that they had a heart donor for him, and he received his transplant. He remembered the first few days how he had felt different then he had his whole life.
“I couldn’t sleep because my heart was beating so loud,” said Ulrich about his new heart. “I haven’t felt my heart like that before.”
His whole family underwent genetic testing to see if they were also at risk for this silent heart issue. The tests revealed that the gene linked to Ulrich’s heart problems had been inherited from his mom. Results for the gene in his dad and sibling came back negative. His youngest daughter’s did as well. But his older two children were found to have the same genetic heart mutations as Ulrich and his mom.
They now get regular pediatric heart checks to stay on top of any potential building heart issues. So far, they have had no heart problems arise.
“For me, it’s about knowing. At least we know. We have the information and now we can keep on top of it,” said Ulrich. “I am a firm believer in genetics.”
He takes part with heart transplant online groups and talks about the importance of genetic testing among those groups. Last year he participated in HerediGene: Population Study to contribute to research that may help families like his who are at risk of hereditary cardiac disease, cancer, and other serious diseases.
HerediGene will study the genes of 500,000 voluntary participants by 2024 to help scientists discover new information that may improve healthcare for future generations.
“We know that hereditary diseases are serious and can leave a permanent mark on our loved ones’ lives,” said Lincoln Nadauld, MD, PhD, chief of precision health and academics at Intermountain Healthcare, and primary investigator for the study. “HerediGene imagines a future where our patients and our loved ones don’t have to suffer the same outcome. Where families struck by hereditary disease don’t have to watch as their children and grandchildren go through the same heartbreaking fate again and again. We each have the opportunity today to help move medicine closer to this future.”
Intermountain has collected 50,000 samples from volunteers and has found actionable genetic variants in approximately 2 percent of those individuals and will be reaching out to those people. With this new access point, they hope to reach far more of the population and make it easier for people to join.
Any U.S. resident may participate, and adults 18 years of age and older can sign up online. Participation involves two steps. Step one is to review and sign the electronic consent form at HerediGene.org. Step two is to visit the nearest Intermountain lab to donate a small blood sample to be sequenced.
Since its launch at Intermountain Medical Center and the Cancer Center of St. George in 2019, HerediGene has been expanding to enroll patients at more than 25 lab locations across the company’s service area. With the new ability to sign up online, the number of locations for participants to give blood to the study at has nearly doubled.
This contactless method of signing up also reduces the risk of COVID-19 transmission and cuts down on time spent in the facility to speed up the visit.
HerediGene: Population Study is a collaborative research effort between Intermountain Healthcare, a system widely recognized as a leader in clinical quality improvement and efficient healthcare delivery, and deCODE genetics, a global leader in analyzing and understanding the human genome. For more information about HerediGene: Population Study, visit HerediGene.org.