Participation Information for Patients and Caregivers

By participating in ALZ-NET, patients living with Alzheimer’s or another dementia can support advancements in dementia research to improve care across all communities.

ALZ-NET is a resource for collecting and assessing real-world data from various communities across the country, including information captured during doctor’s office visits, medical records, and, in the future, electronic health records and other sources. It is important to consider individual differences across the United States – like age, ethnicity, lifestyle habits, or where we live – and how they can reveal important insights about our brain health, how we may react to new treatments and how we develop successful care approaches.

Benefits of taking part
Who can join
Find an ALZ-NET site
What to expect when participating in ALZ-NET
Additional questions
Dementia resources for patients and caregivers

Benefits of taking part

With patients’ willingness to provide data on their treatment and care, ALZ-NET researchers can learn about real-world patterns in diagnosing and treating Alzheimer’s and other dementia. By understanding patterns in care today, ALZ-NET can help health care providers treat Alzheimer’s and all dementia more effectively by providing resources and recommendations to transform clinical care practice. Researchers all over the world can apply to use ALZ-NET data for research purposes to support development of new diagnostics and treatments, and for Alzheimer’s and all dementia. Patients, families, and caregivers who participate in ALZ-NET through their health care providers will always have access to support and resources through the Alzheimer’s Association, including additional opportunities to participate in research.

Who can join

Patients being evaluated for or treated with FDA-approved Alzheimer’s disease therapies across the United States may be eligible to enroll in ALZ-NET. As ALZ-NET continues to expand to sites across the country, our list of health care systems and providers participating in ALZ-NET will be updated regularly.

Find an ALZ-NET site

Find a health system or health care provider in your state or near your ZIP code. If you are a patient or caregiver and need further assistance locating a participating ALZ-NET site near you, please call 800.272.3900 or email TrialMatch@alz.org.

What to expect when participating in ALZ-NET

There is no charge to join ALZ-NET.

ALZ-NET does not require effort on the patient or caregiver’s behalf other than routinely visiting your health care provider for your scheduled visits. Your health care provider must be located at a participating ALZ-NET site. Your provider will advise if you are eligible to participate in ALZ-NET.

If you are eligible and consent to participate, you will be asked to share specific health information related to your Alzheimer’s and dementia treatment and care as part of ALZ-NET data collection. Participants may also be asked to give samples of blood, urine, and/or saliva for lab and DNA tests for future research. ALZ-NET will then collect data from your doctor to track the benefits, safety, and other outcomes of your treatment and care.

ALZ-NET follows strict privacy and data security rules. Health information that participants share with ALZ-NET will be stored in a secure database.

Procedures: ALZ-NET does not require additional procedures to be completed outside of the care a patient would otherwise receive.
Number of visits: Participation in ALZ-NET doesn't require patients to attend any additional doctor appointments.
Duration of participation: Once registered, participation in ALZ-NET continues for as long as consent is provided and care is being received by the health care provider.
Compensation: Patients will not receive any compensation for participating in ALZ-NET.
Medical cost coverage: All care provided through ALZ-NET will be charged to the patient’s health insurance provider. Standard co-payments will be the patient’s responsibility.
Medication: Medications administered to patients are done so as part of their care plan, not as part of participating in ALZ-NET.

Additional questions

If you are a patient or caregiver and have any additional questions about participating in ALZ-NET, call 800.272.3900, or email TrialMatch@alz.org.

What is expected of me if I participate in ALZ-NET?

When participating in ALZ-NET, you should expect nothing more than your routine visits to your memory care or health care provider. The information collected at your visits will be securely provided to and stored by ALZ-NET.

How will confidentiality be maintained?

ALZ-NET adheres to strict data security and privacy protocols to ensure the safety of user information. We will do our best to ensure that all information collected during this research study is kept private. However, we cannot guarantee total privacy. Study information may be given out if required by law. The ALZ-NET database, which can be collected by researchers, will contain only unique identifiers for patients to protect their identities. If information from this study is published or presented at scientific meetings, the participants’ names and other personal information will not be used or even provided to the researcher.

The ALZ-NET investigators need to collect patients’ identifiable information in order to coordinate the collection of health insurance claims data for analysis. Protected health information (PHI) required for the study will be kept in a database dedicated to PHI, which will be separately housed from the primary database used for analysis purposes. Only the dementia specialist, the American College of Radiology (ACR) data management center, the statistical team coordinating the collection of claims data from CMS, and members of the institutional review board (IRB) will have access to the records.

Who is considered eligible for ALZ-NET?

Patients being evaluated for or treated with new FDA-approved Alzheimer’s disease therapies across the United States are eligible to enroll in ALZ-NET. Your health care provider is required to be located in a registered ALZ-NET site. Your provider will advise if you are eligible to participate in ALZ-NET. As ALZ-NET expands to sites across the country, browse our list of health care systems and providers participating in ALZ-NET. This listing is updated frequently as new sites join ALZ-NET.

Is this covered by Medicare?

If you are an ALZ-NET participant, all care that is provided will be charged to the patient’s health insurance provider. Standard co-payments will remain the patient’s responsibility, as they would without participating in ALZ-NET. However, ALZ-NET is approved by the Centers for Medicare and Medicaid Services (CMS) as a Coverage with Evidence Development (CED) study and can be used as a pathway to Medicare coverage for anti-amyloid Alzheimer’s therapies that have received traditional FDA approval.

Dementia resources for patients and caregivers

The Alzheimer’s Association 24/7 Helpline (800.272.3900) is a free service that offers information, local resources, crisis assistance and emotional support.
The Alzheimer’s Association Education Center offers a number of Alzheimer’s and dementia education programs available online.
The Alzheimer’s Association & AARP Community Resource Finder is a database of dementia and aging-related resources powered by Healthlink Dimensions®. This online tool makes it easy for individuals and families who are facing health issues, including Alzheimer’s and other dementias, to find programs and services. In addition to the robust offerings of the Alzheimer’s Association and AARP, users can easily access a wide range of resources, such as housing, home care, legal services and much more.
ALZConnected® is a free online community designed for people living with dementia and those who care for them. Members can post questions about dementia-related issues, offer support, and create public and private discussion groups around specific topics.
ALZNavigator™ is an interactive online tool for individuals living with dementia, caregivers and even people who are just starting to notice memory changes. It provides resources on a variety of topics – from understanding the disease to finding local programs and services – and helps individuals create a custom action plan to print or share digitally.
Resources on alz.org include more information, tools and resources for understanding life and caregiving with Alzheimer’s and dementia.