A projected 13.8 million Americans will suffer from Alzheimer's disease by 2050 if no new medical breakthroughs are discovered. Advanced age remains the greatest known risk factor for Alzheimer's, but genetics also plays a significant role in whether or not someone develops the disease.
At the Banner Alzheimer's Institute (BAI) in Phoenix, we have been working hard for 10 years, and in recent years have helped to design and develop research studies to better understand how the disease unfolds in people at different levels of risk based in part on their genetic background.
Now, as an exciting next step, through the Alzheimer's Prevention Registry (www.endALZnow.org), we are beginning to connect scientists with people around the country who are willing to volunteer to participate in vital Alzheimer's research.
As part of the Registry, we recently launched a new program called GeneMatch, which gives you the opportunity to become part of cutting-edge science, based in part on your individual genetic information.
While scientists do not know exactly what causes Alzheimer's, we do know that a particular gene called apolipoprotein E (APOE) is our strongest genetic clue. APOE has three common variations: e2, e3, and e4. Everyone has two copies of the APOE gene, one from each parent, but the e4 version is most strongly linked to risk for the disease. In fact, scientists estimate that APOE-e4 may be a factor in 20 to 25 percent of all Alzheimer's cases.
Here are the five things you need to know about GeneMatch:
1. You must be between the ages of 55 and 75, live in the United States, and have not yet been diagnosed with cognitive impairment, such as mild cognitive impairment or Alzheimer's dementia, to be eligible to join.
2. Once you join, you will be mailed a simple test kit to determine which copies of the APOE gene you have. All you have to do is swab your cheek and send the sample back to us in the postage-paid envelope.
3. Through GeneMatch, we will match you with relevant research studies based in part on your unique genetic profile and will email you when we have a good fit. You will not learn your genetic results as a part of GeneMatch; however, depending on which studies you are invited to participate in, you could be asked to learn your genetic results.
4. Just because you match with a study, does not mean you are required to participate. The choice to participate in a study is entirely up to you. At all points in the process, GeneMatch is strictly voluntary.
5. Confidentiality is extremely important to us. Your personal information will be kept safe, secret, and secure.
Through the Alzheimer's Prevention Registry, GeneMatch intends to enroll tens of thousands of individuals to advance recruitment efforts. Our goal is to end Alzheimer's by 2025, and every person who enrolls in the program is helping to bring us one step closer to stopping this disease. Visit www.endALZnow.org/GeneMatch to learn if you are eligible and to sign up.
The memories you save could be your own.