You can help shape the future of healthcare.
Q: Why should I participate?
A: NorthShore has embarked on the next major step in advancing medicine—individualized healthcare based on an individual’s comprehensive genetic profile. Hereditary makeup is transmitted through DNA, which varies in different persons, impacting health, risk for specific illnesses and the response to many medicines. Our study will investigate these relationships to advance scientific understanding and, in turn, may lead to improvements in healthcare through genomic research.
Q: How can I help?
A: We are asking all adult NorthShore patients to participate in this project, which will be fundamental to multiple genetic research studies, now and in the future. You can help by allowing NorthShore researchers to study your DNA in combination with research data obtained from your Electronic Medical Record (EMR). Participants donate a blood sample and allow us to study leftover biosamples collected for clinical reasons unrelated to this study. All DNA samples and data obtained from your EMR are de-identified and kept confidential.
Q: How will my information be kept confidential?
A: To ensure confidentiality, we will replace your name with a research number that will be assigned to your study-related information, your DNA, and all biosamples. Only qualified researchers will access your study-related information. The genetic data generated by our research study will not become part of your EMR. Your name and identifying information will not be used when any findings are published.
Please know that NorthShore has an exemplary record of maintaining confidentiality with more than a decade of experience with our EMR system. NorthShore has also obtained a Certificate of Confidentiality from the National Institutes of Health (NIH) for this study.
Q: How will you collect my blood sample?
A: We will take less than one extra tablespoon of your blood for this research. This can occur when you have your next clinically scheduled blood draw at any of NorthShore's hospital outpatient labs or patient service centers. Or if you prefer, you can come in just for this research blood draw. There is no cost to you.
Q: What happens to my sample?
A: Your DNA—obtained from your blood sample—will be stored in highly secured facilities within NorthShore. Our researchers will also access your NorthShore EMR for research purposes, including your medical history, diagnoses, procedures, imaging records, medications and demographic information. This clinical information will be compared to the genetic data across a large number of participants to identify relationships between variation in DNA and many different health conditions.
Q: How many people will be participating?
A: Our goal is to enroll tens of thousands of individuals in this ongoing study. This large sample size will allow us to study the widest range of genetic variants in DNA to best inform about many different genetic and medical disorders, for example, diabetes, hypertension, cancer and asthma.
Q: Will I be recontacted?
A: The choice to be recontacted is yours. If you allow, we may contact you if we find significant results affecting your personal health. Researchers may also contact you to ask you to consider volunteering for future studies, although you have no obligation to do so. Your participation is voluntary and you may withdraw from the study at any time by contacting us at 224.364.7470.
Q: How can I participate?
A: If you are enrolled in NorthShoreConnect, logon and click on the Genomic Health Initiative enrollment link to read and electronically sign the consent form. Or, the the next time you come to the Evanston Hospital Outpatient Laboratory for a blood draw, inform the staff there that you would like to participate in the Genomic Health Initiative. They will provide a hardcopy version of the consent form. Your consent allows NorthShore researchers to study your DNA and access your NorthShore EMR. During your blood draw, we will take less than one extra tablespoon of your blood to be used for the research.
If you have further questions, please call the Genomic Health Initiative staff at 224.364.7470 or email firstname.lastname@example.org.