Alzheimer’s disease is the only terminal disease out of the top 10 that cannot be cured. The disease affects more than 5.2 million Americans, with a new case diagnosed every 68 seconds. Yet, there is hope. This hope rests on the willingness of people to volunteer for clinical trials, which has just become easier due to the Alzheimer's Prevention Registry.
Led by Banner Alzheimer’s Institute (BAI) as part of a new era of Alzheimer’s prevention research, the Alzheimer’s Prevention Registry is an online community of people willing to be involved in studies that will eventually help prevent the disease. The Registry provides a platform for education and advocacy and connects members with applicable clinical trials that are often delayed by lack of volunteers. By speeding that process, the Registry is helping critical prevention research get under way faster, and offers a way for anyone touched by Alzheimer’s – and we all are – to take action.
With so many people interested in Alzheimer’s disease, why don’t more people get involved in studies? Often, people wonder about the time commitment. They also worry about the privacy of their health information that they are required to give and whether or not their health insurance will be affected by participating in a trial – even if they don’t have Alzheimer’s disease. These are valid concerns.
However the registry is simply a way to keep you informed about studies and other breaking news about Alzheimer’s. It’s up to you – the participant – whether or not you ever volunteer for a study. The basic information you are asked to provide when you sign on is only information that you’d provide to register on nearly any Internet site. You decide if or when a study appeals to you enough to become more involved.
Currently, BAI, in collaboration with the National Institutes of Health (NIH), is conducting a major prevention trial to evaluate a treatment in cognitively healthy older adults who are at the highest known genetic risk for developing Alzheimer’s disease. These scientists are working to identify possible biological markers that could eventually lead to early intervention long before symptoms occur.
What we do for others is part of the legacy we leave as human beings. Any information gained from a study moves the whole body of knowledge about Alzheimer’s disease forward. That means that you, as a contributor to this body of knowledge, are leaving an invaluable legacy that will help people in the future. If the only contribution you decide to make is to take a five minute survey, you’ve still contributed. Please go to www.endalznow.org for more information.
Full disclosure: While BAI is a non-profit agency and I, as an eldercare writer, often post about new studies and how to gain information about them, I was compensated for this particular post.