Who can participate in the GIC?
Anyone who is a patient or family member of a GIC site can participate in the GIC – whether they are healthy or ill, or a child or an adult. Participation at each biobank is free, completely voluntary, and you can withdraw at any time. Your decision about whether or not to participate will not affect the care you or your child receives from your hospital. If you are interested in learning about how to participate, please contact your hospital’s biobank.
For patients who are not connected to a hospital that is a member of the GIC, you can ask your physician to contact us to determine if your physician's hospital is eligible for membership.
How is the GIC different from other data commons?
The GIC is the only data commons that includes pediatric genomic data with clinical data at this scale, which is very important to make research discoveries.
Will GIC research activities be shared with patients & families?
How important are patients and families to the GIC?
Patients and families are very important to the GIC. The GIC has set up a Patient and Family Advisory Council (PFAC), a diverse panel of patients and parents of patients of GIC sites. The GIC meets monthly with the PFAC to provide updates on GIC activities. The PFAC serves as a forum to incorporate the patient and family perspectives into our activities to ensure that our work remains patient-centered.
Could you please explain what genetic and genomic research are?
Genetic and genomic research help us bring about improved treatments and cures for diseases. This type of research studies a person’s complete DNA set, including all of their genes. Gaining a better understanding of cells and genes allows researchers to understand how they bring about health or illness in our bodies.
For more information on definitions of terms related to data, research, and the work of the GIC, click here to view our glossary of terms.