Participating in Neurogenomics Research
Neurogenomics researchers at UCLA are studying the role our genes play in brain diseases such as stroke, movement disorders, dementia and epilepsy. These efforts may help us find new ways of preventing, detecting and treating conditions that affect millions of Americans. Our work is possible in part due to thousands of research participants. We hope you’ll consider becoming one of them.
About the Clinical Neurogenomics Research Center (CNRC)
UCLA is among the first programs in the world conducting neurogenomics research. Our Clinical Neurogenomics Research Center represents an ambitious effort to identify gene abnormalities (mutations) that cause brain disease. Learn more about neurogenomics >
Most UCLA Neurology patients have the opportunity to participate in CNRC research. Our work may allow doctors in the future to detect problems earlier and slow the progression of symptoms such as memory loss or seizures.
The Clinical Neurogenomics Research Center: Our Work
CNRC research is different from other medical studies like clinical trials that test new treatments. Find out more about the Clinical Neurogenomics Research Center >
Key neurogenomics research activities include:
- Performing genomic sequencing: We may use a small sample of your blood to map out the expressed portion of your DNA known as exons. Most disease-causing mutations in genes occur within exons.
- Storing information in a biobank: We store biological samples through a sophisticated database for genomic research. The biobank allows us to quickly access information across thousands of research participants to identify patterns. For example, the database could help us determine that certain genetic changes may lead to more severe movement disorder symptoms.
- Conducting research studies: The patterns we identify help us form research questions (hypotheses) that we test through additional studies. These studies will help us confirm the link between specific genetic changes and brain diseases. They may also uncover new ways of preventing and treating these conditions.
Learn More About Neurogenomics Research at UCLA
As with all of our research, participation is voluntary—you decide whether you wish to have your samples and information stored through our biobank. We do everything possible to protect your privacy. And if you change your mind after deciding to participate, you can quit at any time.
Our team is happy to tell you more about our efforts and answer your questions.
Becoming a CNRC Research Participant: What to Expect
Participating in any form of medical research involves some risk. But participating in CNRC research is low risk because it does not change the way you receive care:
- You still receive the tests and treatments your doctor originally prescribed.
- You continue seeing the same team of neurology experts you’ve come to know and trust.
If participating in our neurogenomics research is right for you, here’s what to expect:
- You give permission (consent) to participate in 3 steps.
- 1. Consent to the Precision Health Universal Consent at this link.
- 2. Consent to the Neurology Research Study on the clinic tablets, or on the phone with a coordinator at (310) 825-2320. Preview the video here. Also available in Spanish.
- 3. Electronically sign the HIPAA release on the tablet in the clinic, or sign and scan a consent to the coordinator. Preview the HIPAA release here.
- The next time you need lab work, a sample of your blood or saliva will be shared with the Neurogenomics research team. The extra sample does not require any additional needle pokes.
- If your care team or other scientists are interested in conducting further research on a specific condition, we may request more samples. We will never take additional research samples without your consent.
- If research findings uncover new information that may benefit you, you have the option of learning more about it. Your doctor or a genetic counselor will explain how the information may help. You may wish to consider a new test or treatment. We explain the risks and benefits so you can decide whether you wish to receive it.
Learn more about the Clinical Neurogenomics Research Center, including how to become a research participant, by calling us at 310-825-2320.
UCLA Neurology Universal Consent Consent Videos (English and Español)