St. Louis Alzheimer’s Association Research Registry

ACT to help unlock an Alzheimer mystery

Download an Application for the Research Registry

What is the Research Registry?

The St. Louis Alzheimer's Association Research Registry is for people with dementia, and their caregivers, who are open to participating in Alzheimer’s disease studies.

Researchers whose studies are previously approved through a rigorous screening process can access the database of registered individuals. Your participation may help further the study of Alzheimer’s disease and can lead to advancements in disease treatment and prevention.

Why would I join the Research Registry?

You may hold the key to unlocking an Alzheimer mystery.  Over 95% of what we know about Alzheimer’s today has been discovered in the past 15 years. Researchers have created treatments that are slowing the progression of the disease. In recognizing the hope these drugs offer, the focus of research can shift to discovering a way to stop the disease process completely.

But this research cannot occur without participation from people who have dementia, as well as their caregivers. Scientists work constantly to find better ways to treat diseases. Improved treatments can never become a reality without testing in human volunteers. If you decide to participate in the Research Registry, you will be contributing to the advancement of treatment and potentially bringing us closer to a cure. Every study matters. Every clinical study contributes valuable knowledge, whether or not the treatment works as hoped.

How does the Research Registry work?

A person joins the Research Registry by completing a written application and consent form. A small amount of personal and medical information is collected and stored in a confidential, secure database through the Alzheimer’s Disease Research Center, Washington University.

Only researchers whose studies are previously approved through a rigorous screening process can access the information in the database. If a person’s information “matches” the study’s criteria, the researcher will contact the person. Individuals in the registry may be contacted more than once per year, or not at all, based on how well they “match” studies currently available.

The details of the specific study, including risks and benefits will be explained in full at this time, and you will need to complete a consent form for each separate research study.  Your participation is completely voluntary. Any medication, treatment, or other medical procedures performed during the study are free. In addition, you may be compensated for your participation at the discretion of the specific study, which will be clearly outlined when you are contacted by the research group.

Again, the Research Registry is completely voluntary. Participants will be contacted by the Alzheimer's Association, St. Louis Chapter, at least once each year and asked whether they wish to continue. A person can withdraw from the registry at any time. There is no fee to join and no cost or penalty for discontinuing.

Who should register?

Volunteers, 18 or older with Alzheimer’s disease or dementia, who are interested in participating in Alzheimer’s research are welcome it join the registry. Individuals who are caring for someone with dementia may register as well.

How do I register?

If you are interested in joining the registry please email researchregistry@alzstl.org for an application or download the application listed at the top of this page. Enrollment is entirely free.

What types of Alzheimer studies are underway?

There are many different research opportunities. Below are some types that you might encounter.

Clinical trials
A study to evaluate the safety and effectiveness of new treatments.
A volunteer might receive a dummy treatment (placebo) rather than the actual drug. 
Many trials require multiple visits to the study site, sometimes over months or even years.
An example would be an FDA-approved study of an investigational drug for Alzheimer's.

Longitudinal studies
This is a long term study that observes the participant over a long period of time.
This may extend over as little as a year or as much as a decade.
These studies can be clinical, behavioral, or caregiving-related.
These studies often give clues about how to adjust communication and behaviors.

Behavioral studies
These are observational studies where the behavior of the participant will be observed in
certain situations, generally on a short term basis.

Caregiving research
Studies that involve the formal or informal caregivers (family, professionals, etc).

Web-based research
Online studies that primarily include questionnaires aimed at better understanding the disease
and its effects.

Follow this link for a list of the current studies that are available

**The St. Louis Alzheimer's Association Research Registry is sponsored by the Alzheimer’s Association, St. Louis Chapter. The Alzheimer’s Disease Research Center (ADRC) at Washington University in St. Louis provided a start-up grant. The registry is intended to support Alzheimer- related research and is extended to any investigator or researcher in the St. Louis Metropolitan Area who meets FDA standards and/or is approved by the Performance Improvement Committee of the Alzheimer’s Association, St. Louis Chapter.  ADRC’s support of the registry represents a public service for Alzheimer research in St. Louis and does not confer special privileges to the registry that are not also available to other research programs.**

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