HD Insights™

Vol. 8 - Fall 2014

Issue link: http://www.e-digitaleditions.com/i/370381

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Page 3 of 11

HD INSIGHTS: Dr. Nguyen, you are both a clinician and a researcher. Can you describe your clinical practice? NGUYEN: I do most of the predictive testing and counseling here, including for HD patients and families. Currently I am working more with oncogenetics. As you may have heard, Angelina Jolie spoke publicly about her BRCA-1 mutation, and since then, a lot of requests have come in! HD INSIGHTS: So Angelina Jolie is driving traffic to your center? NGUYEN: Yes! The number of patients has increased by about 200 percent. HD INSIGHTS: Tell us about your experiences with predictive testing for HD. NGUYEN: Unlike the US, we do not have genetic counselors in Germany, so all the genetic testing and counseling is done by medical doctors. I do what a genetic counselor does in the US, but I also discuss potential treatments. I try not to talk too much about treatments with HD patients, because we don't yet have any, but I try to give some hope, and some insight into ongoing research. Dr. Hoa Nguyen is a board-certified clinical geneticist who devotes his time to oncogenetics and predictive testing for HD. As a researcher, he leads the HD Working Group at the University of Tübingen. His team recently participated in the MitoTarget project, a three-year translational research program funded in part by the European Commission and led by Trophos, to study mitochondrial abnormalities in neurological diseases, and to test the company's lead compound, olesoxime, in these diseases. He has also contributed to the development and description of the BACHD rat, a novel transgenic rat model of HD. Dr. Nguyen recently discussed his work with HD Insights. The following is an edited transcript of the conversation. We follow very strict guidelines for predictive testing. In the first session we usually just talk about HD, the family history, possible outcomes, treatment options, and so forth. Patients also receive counseling with a psychiatrist and neurologist before we actually do the test. We give patients a bit of time to reflect on their decision to undertake predictive testing before they actually come in for the blood draw, and then a couple of weeks later, they can return for the results. I think predictive testing is more common here in Germany and in Europe compared with the US, possibly because of insurance issues. In Germany, testing is all paid for, and there is no possibility of people losing insurance. About 30 percent of patients who come in for predictive testing and counseling actually proceed with testing. HD INSIGHTS: One of your primary research projects has been the development of the BACHD transgenic rat model. What are the benefits and disadvantages of this new model? NGUYEN: Most people in the HD field work with mice, mainly because transgenic mouse models are easier to generate. However, a rat has several advantages compared with a mouse. First, rats are larger animals, so there are more possibilities for imaging studies in rats than in mice. Second, in rats you can do more biosampling, such as CSF, and you can also do longitudinal biosampling. (continued on Page 5...) VITAL SIGNS NAME: Hoa Nguyen, M.D. CURRENT POSITION: Head of the Huntington Disease Working Group and Head of Cancer Genetics at the Institute of Medical Genetics and Applied Genomics, University of Tübingen, Tübingen, Germany EDUCATION: MD, Hannover Medical School, Hannover, Germany; research at Emory University, Atlanta, Georgia, USA, and McGill University, Montréal, Québec, Canada HOBBIES: Travel Dr. Hoa Nguyen Meet the Investigator "It is very exciting to be in HD at this moment" Copyright © Huntington Study Group 2014. All rights reserved. H D I N S I G H T S HD Insights, Vol. 8 4

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