Choosing to participate in UCLA’s neurogenomics research is a big decision, and your peace of mind is important to us. We make every effort to help research participants have a good experience. Our first step is helping you learn as much as possible about our work.
Frequently Asked Questions About Neurogenomics Research at UCLA
Below are answers to frequently asked questions. If you don’t find the information you’re looking for, a member of our team is happy to speak with you.
What is the difference between genetics and genomics?
The two terms sound similar but represent different medical specialties:
- Genetics examines a small subset of genes to look for specific abnormalities (called mutations) with a known link to brain diseases such as Huntington’s disease, Friedreich’s ataxia or Wilson’s disease.
- Genomics has a broader focus - all 20,000 genes that live within each of your cells. Applying genomic studies to explore how brain disease occurs is a medical specialty known as neurogenomics.
What is neurogenomics research?
UCLA is home to one of the world’s first programs dedicated to advancing brain disease care through neurogenomics. Read more about the Clinical Neurogenomics Research Center (CNRC) >
Our research is exploring how certain genetic changes put some people at risk for brain diseases such as Alzheimer’s disease. We are also investigating genetic clues that could affect whether one brain disease medication may be more effective than another.
What is exome sequencing?
Information within the DNA of each of your cells (your genome) directs genes that control everything from the color of your hair to your health. While many little changes in each of our genes make us unique individuals, sometimes changes occur that lead to disease. Using technology called genomic sequencing, doctors and researchers identify these changes.
This information allows us to diagnose problems quickly or recommend specific treatments. Exome sequencing uses gene sequencing technology to identify mutations in the coding, or expressed, part of genes, which makes up 1 to 2 percent of the genome. The exome is where we often find mutations that cause brain diseases.
CNRC is using exome sequencing to improve brain disease care by investigating how mutations cause brain disease and may affect your response to treatment. Learn more about neurogenomics >
What do UCLA researchers do with exome sequencing data?
Exome sequencing is among the first steps toward a better understanding of brain disease. CNRC researchers are gathering exome sequencing and other genomic data from thousands of research participants. We store this information in a sophisticated database for genomic research.
Researchers analyze biobank data to identify patterns, such as similar genetic changes in people with Parkinson’s disease. Through additional research studies, we are using this information to improve care for other brain diseases. Read more highlights of our work >
How can I participate in neurogenomics research?
MostUCLA Neurology patients have the opportunity to participate in CNRC research. Find out more about participating in neurogenomics research >
There are different ways of participating. You may choose to:
- Contribute blood, saliva or tissue samples but not receive updates from the research team. This option may be right for you if you do not wish to make any changes to your care plan regardless of the findings.
- Receive updates from our research team if we identify new treatments or care methods and how they may help you. A specially trained genetic counselor may contact you to explain your options in ways you can understand. However, not every study at UCLA returns these types of findings. Your doctors will let you know if you are eligible for these updates.
How does UCLA protect research participants’ privacy?
UCLA does everything possible to protect research participants’ privacy:
- Our biobank contains vast amounts of patient samples and health history data. Names and other identifying details are not shared with the researchers who work with it.
- Only people who have been approved through UCLA’s research-review process (institutional review board or IRB) may access the biobank or patient information.
- We store biobank samples and patient information in a way that allows a select few team members to link it back to you. This linkage allows us to contact you if we make an important finding. As a result, you may benefit from new treatments and care methods if you wish to receive them.
- UCLA follows state and federal health care privacy laws. We also have multiple policies in place for protecting research participants’ information. Read more information for research participants >
How is research at CNRC different from at-home genetic testing?
There are many ways CNRC research is different from at-home genetic testing:
- CNRC research is working toward improving diagnosis and care for all patients with brain or nerve disease. At-home tests generally only provide information about you or your family’s genetic background.
- Researchers at UCLA are working to establish links between specific genetic changes and brain disease to benefit your health. At-home tests may only screen for certain known mutations or a limited number of medical conditions, if at all.
- For certain studies, research results may reveal new care methods or treatments you may benefit from. We deliver results to your doctor and a trained genetic counselor who can explain how they affect your unique situation. At-home testing does not provide this benefit.
- Research on your UCLA samples will only be performed with your permission (consent). You may stop participating at any time, and no one will be able to access your data in the future. At-home testing companies own your data once you provide a sample to them, so you have less control over how they use it.
Learn more about the Clinical Neurogenomics Research Center, including how to become a research participant, by calling us at [contact info].