Information for Alzheimer’s Disease Research Center Study Participants | NYU Langone Health

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Alzheimer’s Disease Research Center Volunteer Opportunities Information for Alzheimer’s Disease Research Center Study Participants

Information for Alzheimer’s Disease Research Center Study Participants

NYU Langone’s Alzheimer’s Disease Research Center is home to one of the largest and longest-running studies of brain aging and Alzheimer’s disease. This longitudinal study follows healthy adults ages 60 and older and aims to improve early diagnosis and understand the course of cognitive decline and dementia. Thousands of volunteers have participated in our study since 1973.

Study participants commit to an initial series of cognitive assessments, imaging studies, and laboratory tests. Volunteers are monitored annually with follow-up appointments. The study data become available to researchers at NYU Langone and beyond and have been used in countless research studies of brain aging and Alzheimer’s disease.

We are actively recruiting participants for our longitudinal study. Please review the video and the information on this page if you are considering joining this study. You can also download a brochure about volunteering for the Alzheimer’s Disease Research Center study. If you wish to refer a friend, please see the referral flyer in English or Spanish.

VIDEO: Learn what to expect when you sign up to be an Alzheimer’s Disease Research Center participant.

Joining our longitudinal study offers you access to comprehensive, world-class medical care and support at NYU Langone Health, including access to the Alzheimer’s Disease and Related Dementias Family Support Program. Volunteers also benefit from opportunities to join research studies and clinical trials, if appropriate. Please join our research registry if you would like to be notified of opportunities to participate in studies.

Most participants in the study consent to brain donation at the time of death. This remarkable act is one of the most important gifts to the field of Alzheimer’s disease research, and every donation is handled with the utmost care and respect.

Eligibility Criteria

We are actively recruiting participants who meet the following criteria:

  • are 60 years of age or older
  • have no problems with memory, or are diagnosed with mild cognitive impairment, Alzheimer’s disease, or another form of dementia
  • are in relatively good health
  • have a study partner who is able to attend appointments or participate by phone

Cost of Participation

There is no cost for participating in any Alzheimer’s Disease Research Center study.

Time Commitment and Testing

New study volunteers commit to one to five initial visits, with briefer follow-up appointments each year. Ongoing participation in the study is very important. Brain changes that lead to Alzheimer’s disease begin years before people notice problems with memory. Our goal is to understand the earliest signs of Alzheimer’s disease in order to develop new treatments to help prevent disease progression.

What to Expect at Your Visits

The intake process spans one to five appointments. Please view information for new study volunteers in English and in Spanish. Participants receive memory and cognitive tests, which are offered in English or Spanish, along with imaging exams of the brain using magnetic resonance imaging (MRI) and positron emission tomography (PET). A blood sample is also collected. Our caring staff of experts is by your side each step of the way, and most patients complete the intake process with little or no discomfort.

Your first two visits include the following:

  • a full explanation of the purpose and procedures associated with the cohort study, after which you will sign consent forms to become a participant
  • a clinical interview to review your medical history and any concerns about memory loss
  • physical and neurological exams to test motor and sensory skills, reflexes, nerve function, balance, and coordination
  • a blood draw
  • memory and cognitive tests
  • a psychosocial assessment, which asks questions about your overall mood and wellbeing

We ask that you have a study partner who is able to provide any additional information that may be needed in person or by phone.

Your next two to three visits include the following:

  • Two brain scans, performed on separate visits. These scans use combination of MRI and PET to look for evidence of two proteins in the brain associated with Alzheimer’s disease: beta amyloid and tau.
  • An optional lumbar puncture. This safe, common procedure uses a needle inserted into the lower back to collect a sample of cerebrospinal fluid—liquid that surrounds the spinal cord. This fluid is studied for evidence of amyloid and tau proteins.

Information for Study Participants

Learn more about what you can expect as a study participant.

Is brain imaging safe? I’m worried about radiation.

Brain imaging is very safe. MRI involves no radiation, and instead uses magnetic fields to construct detailed images of organs and tissue. PET/MR imaging requires the use of a radioactive dye, or tracer, that allows clinicians to visualize certain aspects of the brain. The tracer is injected using an intravenous (IV) line in your hand or arm. Tracers break down quickly and are safely eliminated from the body.

Study participants who complete all requested imaging studies are exposed to low doses of radiation—less than one-fifth of the maximum annual radiation dose limit set by the U.S. Food and Drug Administration for participants in basic research studies.

Our team is ready to answer your questions about the safety of brain imaging. We perform a full clinical evaluation to ensure the testing you receive is safe for you, and all participants are monitored during imaging procedures. You may also wish to speak to your primary care provider before participating.

Will I feel uncomfortable or claustrophobic?

We understand your concern about feeling confined during brain imaging. Our expert care team makes every effort to ensure your comfort at each stage of the process. We offer you a blanket, headphones, and your choice of music, and we communicate with you throughout testing.

When it’s time for your scan, you lay on a table that slides into a large tube that is open at both ends. You are asked to remain as still as possible during the scan. You hear sounds as the machine operates, but you do not feel anything. Deep breaths and calming music can be very helpful. Many patients are able to complete the exam without difficulty.

How long do brain scans take?

You should plan to be at NYU Langone for about three hours on the day of your imaging. Most of that time is spent preparing for the scan or waiting in our comfortable lounge area. The actual scanning time for the combined MRI/PET scan for volunteers joining our study is only about 30 minutes. Other scan times may vary.

How do I prepare for brain imaging? Do I need to fast or change my routines before the test?

You may follow your usual routines before and after the scans. Unless you have been directed otherwise, you should continue to take any daily medications.

Will I receive feedback after the testing?

Yes. You receive feedback from a clinician once all assessments are scored and reviewed. You also have access to clinical and brain imaging results. This does not include research-related tests.

What should I expect at annual evaluation appointments?

Study participants return each year for reevaluation. This includes cognitive and memory tests, a blood draw, and psychosocial assessments. Brain imaging takes place every two to three years.

Psychosocial Resources and Support for Study Participants

Mental health and wellbeing have profound impacts on physical health, and studies show that psychological support for patients with Alzheimer’s disease and their families has long-term benefits on patient care and quality of life.

Research participants are offered a variety of psychosocial and research resources, including the following:

  • A comprehensive evaluation of psychological and emotional wellbeing. This is an opportunity to discuss concerns about aging, cognitive function, social connectedness, or other personal life issues related to these concerns.
  • Referrals to counseling and support services as needed. This includes access to an on-call licensed clinical social worker.
  • Access to information about psychosocial research and connection to empathetic, knowledgeable staff. You may also be offered opportunities to participate in research.

We also offer support for family members at each stage of the caregiving journey, including the following:

  • a comprehensive evaluation of psychological and emotional wellbeing, which offers an opportunity to discuss concerns about the person being cared for, and the emotional and physical impacts of caregiving
  • ongoing contact with support staff through all stages of caregiving
  • referrals to services for caregivers as well as access to an on-call licensed clinical social worker
  • opportunities to participate in research designed to understand the effects of caregiving and provide optimal support