Participating in Alzheimer's research

A Youngtimers Guide ・ Last Reviewed July 3, 2025

If you come from a family affected by early-onset familial Alzheimer’s disease (EOFAD or FAD), you’re not just navigating one of the most devastating genetic realities imaginable—you’re also sitting on the front lines of some of the most important Alzheimer’s research happening in the world.

The scientific community has learned more about Alzheimer’s disease in the last 30 years than in the century before it. Much of that is thanks to you—the FAD community.

The willingness of FAD families to participate in studies, contribute tissue samples, undergo scans, show up for visits, and even donate your brains postmortem has changed the trajectory of Alzheimer’s research. In fact, nearly all Alzheimer’s drugs currently in development exist because of discoveries made using the mutations FAD families carry.

If you’re considering whether or not to participate in research, here’s what you need to know.

What it means to participate in Alzheimer’s research

Participating in research isn’t the same thing as getting treatment. Sometimes you’ll get the investigational drug, and sometimes you won’t. In some trials, no one gets treatment at all. Instead, you’re helping researchers understand how the disease forms, progresses, and might one day be stopped. And yet more research can occurs after one passes away.

Observational studies track what’s happening in your body and brain over time. No drug is involved. These studies are essential for understanding how Alzheimer’s disease progresses.

Drug trials (also called interventional trials) test whether a treatment can prevent, slow, or reverse the disease. Participants are often randomized to receive either the active drug or a placebo. Some trials eventually allow all participants to take the drug in what's called an open-label extension.

Brain donations are another powerful contributions a person can make to Alzheimer’s research. By examining brain tissue after death, scientists can assess exactly how the disease manifested in a particular person. They can also see exactly how an investigational drug affected amyloid plaques, tau tangles, and neurodegeneration.

Videos about clinical trial participation

In this 2-part series , Dr. Randall Bateman answers Youngtimers’ questions about inherited Alzheimer's disease, where the field currently is, and where it's going.

Note that these videos were recorded in 2021 and the Alzheimer’s scene has been progressing rapidly during the past 4 years.

Part 1: Basics of Alzheimer’s disease research

Part 2: Deeper discussion for Alzheimer’s research participants

Types of tests you might participate in

Participating in a study often means undergoing a mix of physical, cognitive, and imaging tests. Some are straightforward. Others can be invasive or uncomfortable. Here’s what to expect:

  • Mental and Cognitive Exams: Includes memory, language, planning, and problem-solving tests. These are routine and non-invasive.

  • Lumbar Punctures (Spinal Taps): A needle is inserted into your lower back to collect cerebrospinal fluid. It’s safe, but not fun. You may feel pressure or a dull ache for a day or two.

  • MRI Scans: Magnetic imaging to check brain volume and structure. You’ll have to lie still in a noisy tube, sometimes for up to an hour.

  • PET Scans: A radioactive tracer highlights amyloid or tau proteins in your brain. These scans help researchers visualize the pathology of the disease.

  • Blood Work: Research is moving toward blood biomarkers that might one day replace spinal taps or expensive scans.

Treatment types that might be tested

In drug trials, treatments typically target either:

  • Amyloid plaques: Sticky clumps of protein that build up decades before symptoms appear.

  • Tau tangles: Misfolded proteins inside neurons, closely tied to memory loss.

  • Both: Newer trials are starting to combine amyloid and tau interventions.

A key example is the DIAN-TU Primary Prevention Trial ⧉, which begins in late 2024. It tests whether the drug remternetug can prevent amyloid plaques from forming in people 11–25 years away from their expected age of onset.

Impacts on your life

Joining a study is a big commitment. It may affect your personal, emotional, reproductive, and financial life in ways you haven’t considered. Here’s what you should know:

  • You may need to delay having kids. Some studies require that you not get pregnant or breastfeed while enrolled.

  • You may receive treatments at home. Nurses may visit you to administer injections or collect samples.

  • You’ll likely travel to study sites. Many studies require yearly or biannual in-person evaluations, which can sometime mean flying to another city and staying for 4-5 days.

  • There may be side effects. You could have reactions to the drug, feel sore after tests, or experience fatigue from the logistics alone.

  • You’ll have to confront the disease head-on. Participating can make Alzheimer’s feel more real and more personal, especially when learning your genetic status or undergoing brain imaging. You may need to navigate conversations with family or employers who may be impacted by your participation in research.

Questions to ask about a study

Before you agree to participate in a study, you want to be sure you understand it thoroughly. Here are some things you might want to ask:

  • What is this study trying to learn?

  • What will participation require from me? (Time, travel. etc)

  • Will I receive a treatment or placebo?

  • What are the known risks and side effects?

  • Will I need to learn my genetic status?

  • What happens if I drop out early?

  • Will I receive any results?

  • What kind of support (emotional, logistical, financial) is offered?

These questions are just an example. The US Department of Health and Human Services (HHS) has compiled a list of questions to ask about volunteering for a research study ⧉.

Entities and opportunities in FAD research

As you plug into Youngtimers and FAD circles, you’ll hear about certain organizations, doctors, and studies. here are some of the things you might hear about.

Key organizations and people

  • DIAN ⧉ & DIAN-TU ⧉ (Washington University, known as WashU) – Based in St. Louis, DIAN is home to the leading observational and prevention studies. The directors at DIAN include:

  • API (Alzheimer’s Prevention Initiative) ⧉ – Based at Banner Alzheimer’s Institute; coordinates other prevention studies.

  • Dr. John Ringman ⧉ – UCLA researcher with a focus on the Jalisco mutation.

  • The Weill Institute for Neurosciences at UCSF ⧉ Memory and Aging Center is conducting drug trials observational studies, and also accepts brain donations

  • Dr. Rudy Tanzi ⧉ – Harvard/Massachusetts General Hospital (MGH) neuroscientist and geneticist who played a role in identifying FAD genes, co-developed a 3D "Alzheimer’s-in-a-dish" model. Writes on lifestyle, resilience, and supplements.

  • Dr. Francisco Lopera ⧉ - Pioneering Colombian neurologist who identified the world's largest known family with early-onset Alzheimer's disease, discovering the PSEN1 E280A (Medellín) mutation, and leading groundbreaking prevention trials that reshaped global understanding of the disease.Passed away in 2024.

Study opportunities

Milestones in Alzheimer’s and FAD research

FAD families have the unique ability to help researchers understand Alzheimer’s disease, because disease develops early and predictably in people with FAD genetic mutations.

Since people who develop FAD are typically younger than those with late onset Alzheimer’s, they have fewer comorbidities to complicate research. And because researchers know when their disease will develop, they’re able to observe what happens to understand the disease better.

Our understanding of Alzheimer’s disease has progressed rapidly over the past 40 years.

  • 1987: Discovery of the first FAD gene, the amyloid precursor protein (APP)

  • 1995: PSEN1 and PSEN2 genes are identified as causes of FAD

  • Mid-1990s: Cerebrospinal fluid (CSF) biomarkers discovered. CSF biomarkers which are proteins and other molecules found in the fluid surrounding the brain and spinal cord that reflect the biological changes occurring in Alzheimer’s disease. FAD families were among the first to contribute spinal fluid samples that showed clear, predictable changes in amyloid-beta and tau decades before symptoms appeared

  • 2000s: PET scans introduced to visualize amyloid, something previously only possible through autopsy. Scientists developed radioactive tracers that bind specifically to amyloid-beta. When injected into a patient, the tracer travels to the brain, attaches to amyloid plaques, and emits signals that can be captured by the PET scanner to create detailed images. This has transformed how the disease is diagnosed and tracked over time.

  • 2008: The National Institute on Aging (NIA) launched the Dominantly Inherited Alzheimer Network (DIAN)

  • 2012: DIAN studies show amyloid builds up 20 years before symptoms

  • 2012: First prevention trial launches

  • 2023: First FDA drug approval for treatment of Alzheimer’s (Lecanemab, marketed as Leqembi)

  • 2024: Research suggests that anti-amyloid drugs can stop or delay progression of symptoms

  • 2025: New blood test diagnoses Alzheimer’s disease and measures tau to determine disease progression

The rate of progress seems to be improving rapidly, and this has been made possible by the smart researchers, generous funders, and YOU - the FAD community.

Tools, resources, and support as you consider participating in Alzheimer’s research

Even though FAD is rare, you're not alone. Many members of the FAD community have faced the decision of whether to participate in Alzheimer’s research.

Youngtimers community programs can facilitate connections to those who have been through this.

Learn more about participating in research with these articles:

Should you participate in Alzheimer’s research?

Participating in research is deeply personal. It’s also profoundly generous.

For some, joining a study offers a sense of agency, something tangible to do in the face of an overwhelming disease. For others, the timing isn’t right, the risks are too high, or life simply won’t allow it. All of these responses are valid.

You don’t owe anyone your body or your data. There is no “right” choice—only the one that aligns with your values, your needs, and your boundaries. And whether you participate directly or support from the sidelines, your voice in this community matters.

If you do choose to step into research, know this: every visit, every vial, every scan moves us closer to a world without Alzheimer’s. And if you don’t? You're still part of that world. You're still part of us.

Youngtimers

Supporting those impacted by familial Alzheimer’s disease with community, education and advocacy

PO Box 151035
San Rafael, CA, 94915

info@youngtimers.org