SALT LAKE CITY (ABC4) – Utah’s Intermountain Healthcare discussed the world’s largest pediatric DNA mapping effort on Wednesday.
The HerediGene: Children’s Study will involve the voluntary collection of 50,000 DNA samples of children as young as newborns, as well as their parents and siblings who wish to participate, at Intermountain Primary Children’s Hospital.
Families and children are invited to participate in the groundbreaking HerediGene: Children’s Study, the largest DNA mapping effort ever to be undertaken in kids.
Information from the study will be used to help researchers at the Primary Children’s Center for Personalized Medicine and Intermountain Precision Genomics to better understand genetic diseases, which can be devastating and could be fatal in children, and research new ways to treat them.
The Center for Personalized Medicine is a collaboration between Primary Children’s Hospital, Intermountain Precision Genomics, and pediatric specialists and researchers at University of Utah Health.
The full briefing is available to watch above. It was streamed at 10:15 a.m. on Wednesday.
The study will use sequencing from blood samples from individuals to help predict the risks of certain diseases, such as cancer, asthma, etc., and to determine the best potential cure for each person.
According to Dustin Lipson, administrator at Intermountain Primary’s Children Hospital, this study will help identify genes responsible for certain diseases. It will also help medical professionals know which medicines and treatments will work the best for individuals.
This will reduce suffering in children and give the best quality of life to families, he says.
Lipson says researchers intend to collect samples at as many sites as possible and to set up new collection sites.
According to Dr. Lincoln Nadauld, Oncologist and Chief of Precision Health and Academics at Intermountain Healthcare, this study is a ground-breaking opportunity for children and families to help protect the health of future generations.
As of right now, the study doesn’t have any deadline, according to Nadauld, though he anticipates that it will take about five years to gather and enroll the expected 50,000 volunteers.
He says that, in addition to using family history, this study will allow medical professionals to map the genes of individuals through sequencing, which will provide “a much more refined and detailed understanding of disease risks.”
This is an altruistic, goodwill study, he states. “I have friends all over the country who are envious of what we’re doing here.”
Nadauld says he is troubled by the number of young patients who are diagnosed with life-threatening diseases at a very late stage. He says this study could help prevent that from happening by giving the patient a tailored treatment program where they can see their entire health picture.
Dr. John Bonkowsky is a Professor of Pediatrics at University of Utah Health and Director of Primary Children’s Center for Personalized Medicine.
He says that the study will involve taking a sample of less than a teaspoon of blood from children and parents. That blood will be turned into DNA and sequenced.
According to Bonkowsky, that less than a teaspoon of blood contains “a book’s worth of data.”
He says that a decade ago sequencing could take several years for one person. Now, it occurs very quickly.
No one is excluded from participating in the study, he adds. Researchers are looking for all types of patients of all ethnicities and backgrounds from newborn babies to teenagers. Volunteers can be healthy or have any type of disease or condition.
“Very simply, the best is yet to come,” said Dr. Marc Harrison, President and CEO of Intermountain Healthcare.
Those interested in enrolling in the study can visit intermountainhealthcare.org/HerediGene to participate.