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Patients & Families
Welcome to the GIC!
The Genomic Information Commons (GIC) is a research initiative of multiple academic medical centers developed with you – our patients, families, and community – in mind. The GIC champions multi-institutional research collaboration through sharing select types of our consented patients’ and families’ health data in order to achieve improved health outcomes for our patients, families, and communities.
The Power of Multi-institutional Research
When multiple hospitals collaborate together, there is a bigger group of patients’ and families’ data for researchers to study. The more information that researchers have, the easier and quicker it is for researchers to make research discoveries. It takes everyone working together to make important medical discoveries.
Patients' and Families' Data
The types of health data that we share are genomic data, phenotypic data, and biospecimen metadata. We only share these data if patients and families consent to their data being shared. Once patients and families consent, they become participants in research. The data stays with participants’ affiliated hospital and never leaves that hospital. The GIC shares only the summary information of the data safely and securely with researchers across the GIC. The summary information of the data does not have any personal identifying information and cannot be traced back to an individual.
Genomic Data: information about the genetic makeup of an individual
Data: information that is grouped together for analysis
Clinical Data: medical information from a patient's electronic health record
Biospecimen Metadata: biological material stored in a biobank for scientific research
Metadata: a set of data that describes and gives information about other data
Biobank: a storage facility of biological samples for use in research
The GIC is the only pediatric research initiative that links participants' genomic data with the participants' clinical data and biospecimen metadata. This gives researchers a complete picture of participants' health at the individual and at the group level, which will drive precision medicine and will accelerate research discoveries.
Participation
Drives research discovery for all diseases
Champions patient-centered research
Accelerates efforts to develop potential therapies for patients
Patients' and families' data is house safely and securely at the hospital they are affiliated with
Enhances clinical care for patients
Patients and families have the ability to make a difference in their and future generations' health care
How to Participate
Anyone who is a patient or family member of a GIC site can choose to participate in the GIC. Patients and families are able to participate in the GIC by enrolling in a GIC site’s biobank. All patients and families are welcome – whether you are healthy or ill, or a child or an adult. Participation at each GIC site's 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 affiliated hospital’s biobank. Signing up is easy and can take as little as a few minutes. If you are already enrolled as a research participant of a GIC hospital's biobank, please contact your affiliated hospital if you would like more information.
For patients who are not affiliated with a hospital that is a member site of the GIC, you can ask your physician to contact us to determine if your physician's affiliated hospital is eligible for membership.