N.Y.C.A.R.E | Spring 2016 Newsletter


New York Consortium for Alzheimer’s Research and Education (N.Y.C.A.R.E.)
The New York Consortium for Alzheimer’s Research and Education (N.Y.C.A.R.E.) is the joint effort of the Alzheimer’s Association, New York City Chapter and the Education and Information Cores of the Alzheimer’s Centers — Columbia University, College of Physicians and Surgeons; Mount Sinai Medical Center; and New York University School of Medicine — funded by the National Institute on Aging.

What Does it Mean to Participate in Aging and Dementia Research?

Every 67 seconds someone in America develops dementia. There is an urgent need to research causes, treatment, and prevention of the disease. While funding is always an issue in research, finding volunteers is just as big a challenge! Estimates suggest that at least 50,000 volunteers, including healthy elders, persons with dementia, and caregivers, are needed for existing studies.

Over the past decade, care for individuals with dementia has improved because of the willingness of individuals to participate in research. Studies suggest that most individuals decide to participate in research out of altruism, the desire to help others. Other reasons for participation include wanting to learn about the newest treatment approach or having the opportunity to contribute towards the advancement of science that might directly benefit their children and grandchildren. Some participants want to take an active role in their healthcare, combat feelings of helplessness, do something interesting, and receive free study-related medical treatment. Aging and dementia research offers hope for people with dementia and their families by involving them in finding treatment for the disease in the future.

What are the advantages of participating in research?

Study volunteers may have the opportunity to receive promising new treatments that are not available outside of a clinical trial, try treatment methods with fewer side effects than usual care, have regular access to medical experts, and help others who have the same disease. There are, of course, potential risks to consider when deciding whether to join a particular study. For example, there may be side effects associated with the experimental treatment or it may not be effective. However, researchers and ethics committees work together to maximize safety, reduce risk, and ensure that participates know all of the risks and potential benefits so they are fully informed. Participants sign a consent form that spells out all of the procedures, provides them with a way to ask the researcher additional questions, and informs them that they can withdraw. Safety monitoring plans are described in all research studies and may include local and national government agencies, such as the FDA.

What can study participants expect?

Although every study is different, most follow a similar process. Each potential participant will first speak with a study coordinator about the goals, procedures, possible risks, and benefits of the study as well as any questions or concerns he or she may have. Participants will then be asked to sign an informed consent form that contains all of the information about the study. Participants will be asked to do different things depending on the type of study and whether the study is recruiting healthy elders, caregivers, or persons with dementia or mild cognitive impairment. For example, in a genetic study, participants may be asked to give blood or consider a lumbar puncture. In a clinical trial, including prevention studies for those at risk for developing Alzheimer’s disease, participants may take an experimental medication. Other studies may include neuroimaging (e.g. MRI or PET scans). Many studies ask participants to take paper and pencil tests that assess cognitive functioning, such as memory and concentration. Some studies require multiple visits, others just a few. While participating in a study usually involves coming to a research center, typically at a hospital or medical school, others offer home visits. It’s important to keep in mind that not every study is right for every volunteer! You should select a study that feels right for you and your family. For example, someone who is very claustrophobic might not pick a study that includes an MRI, and someone who is very busy and travels a lot may not participate in a study that requires many visits to the clinic. However, with over 100 studies currently recruiting healthy elders, persons with dementia or caregivers, there may be a study that feels right for you.

What are the rights of research volunteers?

Signing the consent form does not waive any legal rights or alter participants’ ability to end their participation at a later time. Participants are given a copy of the consent form in case they have questions later. Any participation in a study is always completely voluntary. People are free to decline to participate for any reason at any time, and their decision will in no way affect any services or care to which they are otherwise entitled.

How can people find local research programs?

There are many ways to learn about current research studies, including contacting your local medical centers and visiting a database through the National Institutes of Health at
www.clinicaltrials.gov.