GeneMatch

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GeneMatch is a first of its kind program that will identify individuals who are willing to participate in studies based on their APOE genetic information. The APOE gene is a genetic factor associated with a higher Alzheimer’s risk. Dr. Jessica Langbaum, principal scientist for Banner Alzheimer’s Institute talks about program.

José Cárdenas: Genematch is a first of its kind program that will identify individuals who are willing to participate in studies based on a gene that may increase their risk of developing Alzheimer's. The program is a key part of the future of Alzheimer's prevention research because it has the potential to speed up recruitment to help in the discovery of treatments that may slow or prevent the progression of Alzheimer's disease. Here now to talk about the program is Dr. Jessica Langbaum, principal scientist for Banner Alzheimer's Institute. Thanks for joining us this evening to talk about this. As I understand, this is a program that has national reach but it's headquartered here in Phoenix. Tell us about that.

Banner Alzheimer's institute is the coordinating the lead center in this program and we really are developing an infrastructure to help accelerate enrollment into research studies. This program, gene match is open to individuals between 55 and 75 years of age who live in the United States and don't have any memory and thinking problems like Alzheimer's disease. And our goal is to help match people to research studies, fill those studies faster.

José Cárdenas: And this is an expansion of something that already exists. I mean, there is a registry right now, people can sign up and what, they give their background information and what happens after that?

Dr. Jessica Langbaum: Certainly. So we have the Alzheimer's prevention registry which is a way that we can help raise awareness about research studies. 80% of research studies fail to meet their enrollment goals which means it takes us even longer to get to answers. Is the treatment working, can we delay the onset of Alzheimer's disease, can we prevent it? Gene match allows us to take the registry one step further and help fill studies based on people that we think might be best suited for a particular trial based on their genetic information.

José Cárdenas: They give you a swab and you do a genetic analysis?

José Cárdenas: Correct and that genetic analysis is kept confidential. We don't share the information with anybody, unless that participant asks us to do so for a particular study. It's all kept very confidential and secure but it does allow us to find the best individuals for a particular study in hopes that we can get the answers faster.

José Cárdenas: And as I understand it one of the problems that you're dealing with is the fact that Hispanics aren't participating in these kinds of studies in as great of numbers as they should, given their numbers in the population.

Dr. Jessica Langbaum: That's correct. Hispanics are very much affected by Alzheimer's disease. We know that they're one and a half times more likely to develop Alzheimer's compared to Caucasians. Their numbers are going to sky-rocket by 2050, perhaps sixfold more but they're not participating in research. And so we really overall as a field really want to make sure that we're filling studies with people who might most benefit from treatment. And so we are looking to minority populations, Latinos, African-Americans, to consider joining Alzheimer's research studies so that treatments are developed that are effective for everybody, not just Caucasians that participate in the process.

José Cárdenas: A little bit more about this particular gene study. It's A.P.O.E. is the gene that you're looking for?

Dr. Jessica Langbaum: A.P.O.E is the best established genetic risk factor for Alzheimer's disease. Every has it and it comes in three types and depending on which type you get from your mom and your dad, might put you at different levels of risk for developing Alzheimer's disease. If you happen to get the two copies of the four types, the bad high-risk type, that puts you at the highest risk for developing Alzheimer's disease. It's not deterministic. That means just because you get those two copies does not mean you would definitely get Alzheimer's disease but your chances are 30% to 55% that you will develop Alzheimer's disease by age 85. If you have one copy, your risk is slightly lower, about 20%, 25% and there are people with no copies. So we're looking at which treatments might be most effective based on your genetic risk for developing Alzheimer's disease.

José Cárdenas: Now, in terms of disclosure, if somebody gives the swab and it's analyzed, under what circumstances would they be told that they have either one or both or two of these particularly harmful genes?

Dr. Jessica Langbaum: Gene match as a program does not disclose genetic results. We think that genetic disclosure must be done with genetic counseling. So if a study that is recruiting from gene match, we refer a participant to asks somebody to learn their genetic results, it's always up to the participant whether they decide that they want to proceed and learn those results or they may say thank you, but no thank you, the choice is always theirs. If somebody does decide to learn their results, it should done by a genetic counselor, to clearly explain all the implications, and all the information that they may learn.

José Cárdenas: Put it in context.

Dr. Jessica Langbaum: Exactly, exactly. Just reading on a computer screen isn't enough. You really need a genetic counselor, somebody who can walk through the issues with you, explain what the results mean and don't mean for yourself or your family members, for your loved ones.

José Cárdenas: So how do people go about participating in gene match? What are the steps?

Dr. Jessica Langbaum: It's really quite simple. People can go to our website, www.endalz.org. If you're between the ages of 55 and 75, you'll be offer gene match. We also have a direct contact to gene match by going to our website, back slash gene match.

José Cárdenas: This is very useful information and it does seem as if Arizona has become the center for research in this area and we thank you so much for joining us on "Horizonte" to discuss it. And that's our show for tonight. Thank you for watching. From all of us here at "Horizonte" and your Arizona PBS station, I'm Jose Cardenas. Have a good evening.

Video: Funding for "Horizonte" is made possible by contributions by the Friends of Eight, members of your Arizona PBS station.

Dr. Jessica Langbaum:Principal scientist for Banner Alzheimer's Institute

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