What is the NUgene Project?

NUgene will be a collection of 100,000 DNA samples and associated healthcare information from patients who receive their care at a Northwestern-affiliated institution. This information will be used to facilitate genetics research on diseases common to the general population such as cancer, diabetes, arthritis and heart disease.

Why is NUgene important for my patients and me?

NUgene is a new research project that combines population-based research with genetic discovery, which will ultimately lead to improved methods of diagnosing and treating common diseases.

In the 1960's, an important research project uncovered multiple risk factors related to heart disease by studying a population's lifestyle and environmental influences. Today, it is well known that smoking, high cholesterol and/or high blood pressure can increase the risk of heart disease. More recently, genetic research changed the way doctors treat breast cancer and certain types of lymphoma by providing better methods to define different types of cancers.

Are my patients eligible to participate?

The NUgene Project hopes to enroll a diverse population of people. Both healthy individuals and those with a medical condition are encouraged to participate. We also hope to enroll people of every ethnicity. In order to be eligible, an individual must:

*Be at least 18 years of age

*Have a medical record number at one of the following institutions: Northwestern Medical Faculty Foundation (NMFF), Northwestern Memorial Hospital (NMH), Northwestern Memorial Physicians' Group (NMPG), Evanston-Northwestern Healthcare (ENH), or the Rehabilitation Institute of Chicago (RIC)


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What is the enrollment process?

Participation requires a one-time enrollment process, typically lasting 20-30 minutes. During this process the participant will:

*Have a brief discussion with a research coordinator to inform them about the study and to complete computer activation

*Read and sign the NUgene consent form

*Complete a one-page health history questionnaire

*Have one tube (10 ml) of blood drawn

How does the NUgene Project protect the privacy of participants?

Listed here are some of the highlights of our participant protection mechanisms:

*NUgene has been granted an NIH Certificate of Confidentiality that protects the privacy of research study participants

*All study materials are coded with unique serial numbers to minimize the likelihood that non-study personnel will learn the identity of NUgene participants

*All study information routed over the Internet uses secure websites with advanced encryption technologies

*The data repository itself consists of a dual database system where primary identifiers, such as names, are housed in a separate database from all NUgene data


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How can I get patients involved from my clinic?

When you arrange a "recruitment" schedule with NUgene's clinical director, a research coordinator will regularly visit your clinic and enroll your patients. During that time, the research coordinator is onsite to inform patients about the project and assist them with the informed consent, HIPAA authorization and health questionnaire forms. Arrangements for patients blood to be drawn will also be set up.

How can my patients and I benefit from the NUgene Project?

Large scale studies such as the NUgene Project will lead to the incorporation of genetics into nearly all aspects of healthcare.

* Physicians will be able to predict a patient's response to certain drugs and environmental substances based on the individual's genetic make-up, making medical interventions more specific and successful

*A genetic risk assessment will predict susceptibility to specific diseases, such as diabetes, heart disease and cancer. This knowledge will allow patients to alter their lifestyles to reduce the likelihood of developing certain
diseases or provide the opportunity for treatment with preventative or disease-delaying medicine

*Today, some 100,000 people die each year from adverse reactions to drugs, and millions of others must bear uncomfortable or even dangerous side effects. As DNA sequences that influence drug response are identified, the number of adverse reactions will decline and most side effects will be limited


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