Written by Jennifer Phillips, MPA, senior program manager, Knight Alzheimer Disease Research Center
Alzheimer’s disease (AD) was first identified in 1906, yet most of what we know about the disease has been discovered in the last 30 years. Certainly, technology and science have been at the leading edge of decoding the disease, but none of the work would be possible without the support of dedicated volunteers donating their time and effort to make discoveries possible. Sometimes it is hard to imagine what research participation may look like. Or it may be difficult to imagine how one person can make a difference in the face of such a terrible disease. But citizens around the St. Louis area and beyond have been doing just that: helping us chip away at this disease year by year.
The Knight Alzheimer Disease Research Center (Knight ADRC) at Washington University School of Medicine has been at the forefront of research since it was established in 1984. It is one of 37 centers funded by the National Institute on Aging (NIA) located at major medical institutions across the country. Researchers at these Centers are working to improve diagnosis and care for people with AD, as well as trying to find a treatment or prevention for AD and other types of dementia.
Our flagship research study, the Memory and Aging Project, has been collecting information from our research volunteers longitudinally for 40 years. That means our participants visit our office each year for an in-depth interview about their memory and thinking. Our dedicated volunteers (people with normal memory and thinking, and also some with mild memory loss) also complete a modest blood draw, participate in imaging studies such as MRI and PET scan, and complete a lumbar puncture for the collection of cerebrospinal fluid (CSF). But unlike the interview, those procedures do not happen each year. The goal of our research is to learn about each volunteer’s thinking and memory, see if or how it changes over time, and compare that information to what we learn from their body through blood, imaging and CSF.
If that seems like a lot of information–it is! And we hope that volunteers will continue their annual visits as long as they are interested and able to participate. The long history of interviews has allowed researchers to characterize what changes are normal as we age and what changes may be related to AD or a similar type of dementia. Some of our volunteers have been with us for over 30 years, and their contributions have helped researchers learn about when the disease starts, how to diagnose it in a clinic or lab, and even what directions to take in the development of treatments to fight AD.
As the Knight ADRC has grown, so too has the research. We now have many different studies with varying degrees of involvement. Our goal is to have a way for anyone who would like to volunteer to do so in a way that is comfortable and rewarding for them. Even though we have learned so much, we still have quite a distance to go. Our researchers continue to study memory and thinking across the lifespan and are especially invested in making sure that research discoveries are beneficial to people of all races, ethnicities, genders, income levels and educational backgrounds. The best way to do that is to connect with potential volunteers who represent all facets of the diverse world we live in. Only by learning from the diversity of our society can we move forward creating treatments to benefit everyone equally.
It’s very hard to describe 40 years of research in just one blog post. And it’s even harder to connect with readers and inspire them to participate. I hope that reading about research today will be a starting point: maybe you will learn more about Alzheimer’s disease. Maybe you will share this post with a friend or family member. Or maybe you will connect with the Knight ADRC to ask questions, learn more, and decide if research participation is right for you. Our contact information is below, and you are invited to reach out at any time. We would love to answer any questions you may have and maybe bring you along on our journey to help make AD a thing of the past.
Why participate in AD research? Read more here.
Learn more about the Memory and Aging Project.
Complete this form to have someone contact you to discuss volunteering.
Questions? Call or email Jennifer Phillips at firstname.lastname@example.org or 314-286-2882