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Table 2 Amyloid imaging disclosure process brochure template

From: Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants

Brochure topic

Key points

What is the (insert name of secondary prevention trial (for example: A4 study)) Trial?

This should be study specific and include basic enrollment criteria, objective, and study design

Why is this (insert name/description of intervention) being tested?

This should be study specific and include basic explanation of the intervention’s mechanism and safety profile

What will happen if I enroll in the (insert name of secondary prevention study) Trial?

This should be study specific and include information about the screening and enrollment process and study procedures

What is Alzheimer’s disease?

Alzheimer’s disease is a brain disease.

It is the most common cause of dementia.

Common symptoms of dementia caused by Alzheimer’s disease are problems with memory and thinking that impair a person’s ability to do their usual and everyday activities.

As persons with Alzheimer’s disease develop symptoms, the first to appear are memory and thinking problems that are bothersome but do not interfere with daily activities. Over time, usually several years, as these problems worsen, the person develops dementia.

What is amyloid?

Amyloid is a protein in the brain

In Alzheimer’s disease, amyloid builds up and brain function gets worse

Amyloid can sometimes be detected years before a person has noticeable memory problems.

How do we know whether someone has brain amyloid?

An amyloid PET scan measures brain amyloid.

What does having a brain amyloid scan involve?

An injection of a radioactive drug.

The scan measures the level of amyloid in your brain.

What does an elevated level of brain amyloid mean?

An ‘elevated amyloid’ result:

- means that amyloid plaques are present in your brain.

- does not mean you now have Alzheimer’s disease dementia or that you will ever get Alzheimer’s disease dementia.

- means you may be eligible to join Alzheimer’s prevention trials that will test anti-amyloid therapies.

Recent studies suggest that elevated levels of amyloid may increase your risk of developing Alzheimer’s disease dementia in your lifetime.

Is an elevated level of amyloid like other medical risks?

The relationship between elevated amyloid and Alzheimer’s disease dementia is similar to the relationship between high cholesterol and heart disease.

Many factors protect a person from developing memory or thinking problems even if they have elevated levels of amyloid.

Good general health and a healthy lifestyle are known to lower the risk of Alzheimer’s disease dementia.

What does a not elevated level of brain amyloid mean?

A ‘not elevated’ amyloid result:

- means that it is unlikely you have amyloid plaques in your brain at this time.

A person who has a ‘not elevated’ amyloid level could develop:

- an ‘elevated’ level in the future.

- Alzheimer’s disease dementia in the future.

Why is a brain amyloid scan necessary to participate in the (insert name of secondary prevention study) Trial?

The trial will test whether an amyloid lowering drug given to people with elevated amyloid will lower the amount of brain amyloid and also prevent or slow declines in memory.

(This text can be edited to fit the specific secondary prevention trial’s goals and intervention)

The brain amyloid scan will indicate whether a person has elevated amyloid and is then eligible to participate in the trial.