RecruitingOBSERVATIONAL

Dominantly Inherited Alzheimer Network (DIAN)

This study, called DIAN, investigates Alzheimer's disease that runs in families. Researchers want to understand how it develops by looking for early changes in certain people. They are focusing on individuals who have a strong family history and may carry a specific gene mutation for Alzheimer's. The goal is to discover 'biomarkers' – like a warning signal – that show up before any memory problems start. By tracking these changes, the study hopes to improve our understanding of the disease and eventually help doctors predict who will get it and when, paving the way for earlier treatments. It also compares this inherited form of Alzheimer's to more common types.

At a glance

Status

Recruiting

Sponsor

Washington University School of Medicine

Enrolment target

700

Start

01 Jan 2009

Estimated completion

01 Jul 2026

Alzheimer's Disease

What is this study about?

The DIAN study is looking at a specific type of Alzheimer's disease that, sadly, runs in families. This form is quite rare, affecting less than 1% of all Alzheimer's patients, but it's very important for research. This is because the genetic changes (mutations) that cause it are known, and scientists believe these changes are key to understanding how the disease starts and progresses.

Researchers want to find out if there are any detectable changes in the body or brain long before memory problems or confusion (symptoms) begin to show. Think of it like a very early warning system. They're particularly interested in how certain substances in the brain and body, like a protein called amyloid-beta 42, change over time. They believe these changes happen in a specific order, which they can see through special brain scans and tests of body fluids.

The study also aims to compare this inherited form of Alzheimer's with the more common types that usually affect older people. By understanding the similarities and differences, they hope to gain insights that could help everyone affected by Alzheimer's disease. The ultimate goal is to pinpoint these early signs so that one day, doctors might be able to predict who will get Alzheimer's and offer treatments much sooner.

Key takeaways

This study focuses on Alzheimer's that runs in families.
It aims to find early signs of the disease before symptoms appear.
Participation involves regular visits for tests and scans, usually every two years.
It helps researchers understand the disease, which could lead to future treatments.
There are no direct medical treatments offered as part of the study.
You can withdraw from the study at any time.

Who may be eligible?

To join this important study, you generally need to be at least 18 years old and have a parent who has been diagnosed with this type of inherited Alzheimer's disease or is known to carry one of the specific gene mutations for it. You should also be able to understand and provide written permission to take part.

The study is particularly looking for adults who don't yet show any significant memory problems. They are very interested in people who are much younger than the age their affected parent started showing symptoms. You'll also need two people (who are not your full brothers or sisters) who know you well and can provide information about you to the study team. You should be able to speak and understand English, or another language approved by the study, clearly.

Unfortunately, if you are under 18, have major illnesses that would make it hard to complete study visits, or need full-time nursing home care, this study might not be suitable for you. Also, if you don't have anyone who can act as an informant for the study, you wouldn't be able to participate.

Quick self-check

Are you 18 years old or older?
Does one of your parents have a confirmed inherited form of Alzheimer's?
Do you currently have no or very mild memory problems?
Do you have two people (not full siblings) who know you well and could provide information for the study?
Are you comfortable speaking and understanding English (or another approved language)?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you join the DIAN study, you would typically visit the study clinic every two years. During these visits, the research team would carry out a number of assessments. This might include tests of your memory and thinking, and samples of your blood and other body fluids might be taken. You would also likely have special brain scans to look for changes in your brain. There are no medications involved in this particular study, as it focuses on understanding the disease rather than treating it directly. Each visit might involve several tests, but the team will guide you through everything. The study aims to follow participants over a long period to observe changes over time.

Potential risks and benefits

Taking part in research studies like DIAN can offer some potential benefits. You would be contributing valuable information that could lead to a better understanding of Alzheimer's disease and potentially new ways to diagnose or treat it in the future. While there's no direct personal medical benefit expected, some people find comfort in knowing they are helping others. As with any medical procedure, there are some potential risks. These are usually minor, such as discomfort from blood draws or the need to spend time at the study centre. The study team will explain all possible risks in detail before you decide to join. Remember, taking part is completely voluntary, and you have the right to withdraw from the study at any time without giving a reason, and this won't affect your medical care.

Locations (26)

Mayo Clinic Jacksonville
Jacksonville, United States· Recruiting
Indiana University-Indiana Alzheimer Disease Center
Indianapolis, United States· Recruiting
Brigham and Women's Hospital
Boston, United States· Recruiting
Washington University in St. Louis School of Medicine
St Louis, United States· Recruiting
Columbia University
New York, United States· Suspended
University of Pittsburgh
Pittsburgh, United States· Recruiting
Butler Hospital
Providence, United States· Recruiting
University of Washington
Seattle, United States· Recruiting
Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia (FLENI)
Salta, Argentina· Recruiting
Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia" (FLENI) Instituto de Investigaciones Neurológicas Raúl Correa
Buenos Aires, Argentina· Recruiting
Neuroscience Research Australia
Sydney, Australia· Recruiting
Mental Health Research Institute, University of Melbourne
Melbourne, Australia· Suspended

+14 more sites — see the official record for the full list.

Common questions

What is 'inherited Alzheimer's disease'?

This is a rare form of Alzheimer's that is passed down through families due to a specific gene change.

Why is this study important?

It helps researchers understand how Alzheimer's starts, which could lead to earlier diagnosis and treatments in the future.

Will I receive any personal medical treatment?

No, this study focuses on understanding the disease through tests and observations, not on providing treatment.

What kind of tests will I have?

You might have memory tests, blood tests, and special brain scans, usually every two years.

Can I leave the study if I change my mind?

Yes, you are free to leave the study at any time, for any reason, without it affecting your medical care.

How to find out more

Alisha Daniels, MD,MHA

(314) 273-9057 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.