What may be the largest healthcare associated genome study ever attempted has reached a participant milestone with 100,000 people now enrolled. Jeanette Bennett was the 100,000ish person to join HerediGene at Utah Valley Hospital’s outpatient lab.
“I want to be part of helping researchers learn even more so my children and grandchildren will have a greater chance of preventing or living through their own health challenges,” says Jeanette, who’s a cancer survivor and the owner and editor-in-chief of Utah Valley Magazine. “Participating in HerediGene is the ultimate altruistic, community-minded act.”
As the HerediGene: Population Study amplifies its growth at Intermountain hospitals and clinics, there are already novel discoveries coming to the world—thanks to caregiver and patient participants,
Lincoln Nadauld, MD, PhD, is HerediGene's principal Investigator.
“From these first 100,000 participants we’ve already made three extraordinary discoveries. Some of those have been published or are soon to be published,” says Lincoln Nadauld, MD, PhD, HerediGene’s principal investigator and Intermountain chief of precision health and academics. “All of them have an enormous impact on how we care for patients. It’s a huge achievement.”
In October, Dr. Nadauld joined Intermountain chief scientist Dave Jones, PhD, and deCODE genetics in announcing one of those HerediGene-contributed discoveries about the genetic underpinnings of vertigo. Dr. Nadauld says he didn’t anticipate we’d be making such important discoveries in the first 100,000 individuals, especially when HerediGene launched two-and-a-half years ago.
“Now I anticipate in the next several hundred thousand participants we’ll make even more important discoveries that will help people with very serious diseases,” he says. “I’m so happy for our team and our patients. The statistical power that’s available to us through these large populations is what makes those discoveries possible.”
Intermountain senior scientist and HerediGene co-investigator Tyler Barker, PhD, has joined other researchers to understand genetic conditions that may lead to osteoarthritis.
“This study is going to be groundbreaking for researchers and physicians, of course, but for patients, too,” says Dr. Barker. “This is really about how we can get the best care to the patients we’re serving.”
“About 3% to 5% of people who enroll in HerediGene have an underlying genetic risk they may not be aware of,” says Brent Hafen, Intermountain genetic counseling services director. “A key part of HerediGene is identifying and contacting these participants so they may benefit from prevention efforts that lead to improved medical care. Intermountain's genetic counselors recently began contacting study participants with genetic alterations associated with an increased risk for conditions such as heart disease, liver disease, and cancer. About 130 study participants have been contacted to date.”
Thousands more are expected to be notified over the next several years. According to Travis Sheffield, HerediGene’s operations director, this clinical follow-up to a research study is how we’re following through with our promise to our patients."
“A hundred-thousand people participating in HerediGene is monumental,” Travis says. “This shows our communities trust who we are and what we’re doing at Intermountain to help people live the healthiest lives possible.”
You can join HerediGene at no cost by consenting at HerediGene.org and donating a small amount of blood at an Intermountain lab or draw station ranging in locations from Burley, Idaho, to St. George, Utah. Children can also participate in the study at Primary Children’s Hospital.
If you’d like to share your story of why you’re joining HerediGene, contact dave.derurange@imail.org.