What is the NUgene Project?

The NUgene Project is a long-term research study initiated by the Center for Genetic Medicine at Northwestern University. NUgene will be a collection of 100,000 DNA samples with associated clinical healthcare information. This project will collect and store DNA samples from patients who receive their healthcare at Northwestern-affiliated institutions. The health information and blood sample provided will be used by researchers to examine (1) the genetics of common diseases such as cancer, diabetes, and heart disease and (2) the role of genetics in treatment outcomes and efficacy. The NUgene Project is sponsored by the Center for Genetic Medicine with support from Northwestern University, Northwestern Memorial Hospital, and Evanston-Northwestern Healthcare. It is a non-profit research endeavor.


Who is eligible to participate?

The NUgene Project hopes to create a population of great diversity. Healthy individuals as well as 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).


How can I benefit from this research?

This study may aid in our understanding of human disease and/or the role genes play in disease. It may also be able to help in the development of new treatments or screening tests as we improve our understanding of what causes many health conditions. Large scale studies such as the NUgene Project will lead to the incorporation of genetics into nearly every aspect of healthcare. By participating in NUgene, you may not receive any direct benefit yourself, but you are making this type of ground-breaking research possible and improving healthcare for generations.


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What do I have to do to participate?

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

*Have an opportunity to ask questions about the NUgene Project

*Have a brief discussion with a research coordinator to complete computer activation

*Read and sign the NUgene consent form

*Complete a one-page health history questionnaire

*Have one tube of blood drawn (approximately 1 tablespoon)


How will my privacy be protected?

In order to protect the privacy of our participants, the NUgene Project has been granted a Certificate of Confidentiality from the National Institutes of Health (NIH). This certificate protects the privacy of research study participants, preventing all research material from being subpoenaed by any authority, including a court of law. Additionally, all study materials are coded with a unique bar code to minimize the likelihood that non-study personnel will learn the identity of NUgene participants. NUgene's data repository itself consists of a dual database system where primary identifiers, such as names and addresses, are housed in a separate database from the NUgene research elements, like clinical and genetic information. Any DNA or medical information released to other researchers will not include any personal identification.

The NUgene database is located in a secure facility with strictly limited access at Northwestern University. Only the study investigator, members of the investigator's staff, and the Northwestern University Institutional Review Board will have the authority to review your study records. These professionals are required to maintain confidentiality regarding your identity.

These protective methods make it extremely difficult for any research results to be linked to you or your family.


Will I find out the results of the research?

Neither you nor your doctor will receive the results of any research done on your DNA. However, all participants have the option to receive a newsletter containing updates on all current research and findings, as well as information regarding future research from the NUgene Project.


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