Though only about one percent of the population have a rare, genetically inherited form of Alzheimer’s disease, studies with this population give scientists great insight into how the disease works as well as ways to prevent and treat it in the general Alzheimer’s population.

Dr. Randall Bateman is the Charles F. and Joanne Knight Distinguished Professor of Neurology at the Washington University School of Medicine and Director of the Dominantly Inherited Alzheimer’s Network Trials Unit (DIAN-TU), which aims to prevent the onset of cognitive impairment by launching the first clinical trials for this population. He joined us for this month’s call to describe the study and discuss its implications for the broader population of people who have, or may get, Alzheimer’s disease.  

CLICK THE PLAY BUTTON AT LEFT TO HEAR THE DISCUSSION.

Key Highlights from the Call

1. Alzheimer’s was historically studied as a rare disease that occurred in younger people. In the 1970s and ‘80s, researchers realized the same disease was also occurring in older people as well, and in a much larger percentage of the population.
2. DIAN-TU is the first ever prevention trial in Alzheimer’s disease. In this global network of patients with dominantly inherited Alzheimer’s disease, researchers are able to predict not just who will get the disease but when they will get it, which has allowed them to launch the first prevention trial in Alzheimer’s disease. The main goal is to try to prevent cognitive loss, and information from this study will have applications for all people with Alzheimer’s.
3. Different biomarkers are being tested in this trial. This may lead to shortcuts that will allow us to test many more drugs.
4. People in this study may respond better to treatments. Dominantly inherited Alzheimer’s strikes at a young age, so patients are less likely to have other diseases or health issues. This makes them a pure population to study and gives excellent information about drug efficacy.
5. Researchers are optimistic that we are close to a treatment. Even penicillin failed its first few clinical trials, meaning it is important to find the right dose and the right patients. We have information that is pointing us in the right direction, so it is important to double down efforts to bring together researchers and public-private partnerships and increase the number of trials. With increased funding and research, we could have a possible treatment as soon as a few years from now.

People who come from families who have these mutations are eligible to join the trial. If you think that your family has a high prevalence of Alzheimer’s disease that strikes people at a young age, typically less than age 55, visit www.DIANexr.org, to learn more about this study, or you can contact them directly at 1-844-342-6397 or by email at [email protected].

If you don’t qualify for this specific trial, other resources mentioned by Dr. Bateman include: The Alzheimer’s Prevention Registry and The A4 Study. Dr. Bateman also provided the information for the National Society for Genetic Counselors, which has a ‘find a genetic counselor’ tool.

Our thanks to Dr. Randy Bateman for sharing his important research. And a very special thank you to donations from Karen and Chris Segal and the Zickler family foundation, which made this call possible.