Intermountain Healthcare & the University of Utah are conducting this research to:
- Better detect and predict disease
- Develop new medicines, treatments, and measures to prevent disease
- Personalize healthcare for future generations of families
- Lower healthcare costs
- Discover genetic causes for diseases such as cancer, heart disease, and neurodegenerative disorders
Locations
Why These Families Joined HerediGene®
Frequently Asked Questions
What happens after my child has provided a sample?
Privacy – after your child’s sample was collected, we de-identified their personal health information
Analysis We expect that in a small percent of participants, research testing may find a change in DNA (a genetic variant) that may lead to an increased risk for certain types of disease.
Results If a variant is found, a genetic professional will reach out to discuss additional testing and explain what any confirmed results mean (this is at no expense to the participant). Most participants will not be contacted after participation.
Can adults participate in the study with a cheek swab sample too?
Adults are encouraged to participate along with their children, but the HerediGene: Population Study for adults was designed around blood samples; and to be consistent with the adult cohort of the study, parents will need to participate with a blood sample.
Do children need to be current patients or have lab orders to participate?
No. Children are welcome to visit to the Primary Children’s Hospital Eccles Outpatient Lab (mention to the front desk/security that you are there to participate in the study) and join the study without a doctor’s or lab orders.
Is there a cost to participate?
There is no cost to you or your child for participating. The HerediGene: Population Study will cover the cost of the research testing and additional confirmation testing if needed.
Can my child/ I participate at other locations?
Currently, only Primary Children’s Hospital is accepting pediatric samples from families who are not current patients. However, patients at participating facilities (and parents) may be introduced to the study during visits for their care. Adults may also participate at Primary Children’s as well as the other participating Intermountain locations listed here.
Do I have to participate if my child does?
The study is completely voluntary. No one, including our patients or their family members, is required to participate in this study.
If I choose not to have my child participate, will this impact their level of care?
You can choose not to give permission for your child to take part in the study. If you choose not to participate, your child will still receive our standard of quality care.
Can my child participate if they are sick or have a known health condition?
We will enroll children with or without a known or suspected health and/or medical condition.
Who will have access to my/my child’s healthcare records?
Only Intermountain caregivers and employees from the University of Utah working at Primary Children’s Hospital may access a participant’s personal health information for healthcare or research purposes.
What will Intermountain do with my/my child’s healthcare records?
We de-identify yours and your child’s data for this study so that the DNA and healthcare records we collect aren't associated with you or your child. This de-identified data set is used for research.
Can the HerediGene: Children’s Study help if my child currently has a diagnosis or illness?
We cannot guarantee or promise that your child will receive any benefits from this study. However, if an actionable mutation (or pathogenic variant) is identified in his/her blood that may alter future treatment(s) intended to improve health, you may be contacted. Therefore, there is a potential for short- and long-term benefit with the early detection of a pathogenic variant. We hope the information learned from this study will increase our understanding of precision medicine and improve future treatments in healthcare for all patients.
How long will my child be enrolled in the study?
While there is no planned end date for this study. Once your child turns 18 years old, a member of the study team will attempt to reach out to determine if your child would like to continue with the study. If your child chooses to leave the study as an adult, we will stop collecting information on him/her thereafter, but previously collected blood (and corresponding data) and health information up to withdrawal will be available for this study.
How can my child/I leave the study?
If you or your child decide to stop participating in the study, you can leave at any time. Please refer to the study consent you received at the time of enrollment for more information. You can ask us to stop collecting your child’s information by leaving the study, however, we will still use the information and samples already collected. You and your child will not be able to join the study again. If you decide to leave the study, your child will still receive the same quality care you would have received without participating in the study.