The goal of the IDEAL study is to understand the impacts of learning about risk for Alzheimer’s disease among Latinos aged 40-64 living in northern Manhattan. Participants will be given estimates of their risk of developing Alzheimer’s disease by age 85, based either on their family history of Alzheimer's disease or their family history plus their APOE genetic test results.
Why is this study important?
This study is the first of its kind to study the impact of disclosing risk information about Alzheimer’s disease among Latinos. Similar studies have been done predominantly in people of European descent (REVEAL-Study). The IDEAL study is important because now, more than ever, genetic variants (changes in a gene) that are associated with common medical conditions are being discovered rapidly and tests for these variants are being marketed by direct-to-consumer testing companies (e.g., 23andMe). The impacts of learning about risk for a serious, untreatable condition such as Alzheimer's disease are unknown.
Who can participate?
People are eligible for the study if they live in northern Manhattan, are 40-64 years old, and self-identify as Latino/a or Hispanic. Only one eligible person per household can participate.
Participation is limited to people who received a letter from a research firm called Abt Associates. This letter invites community members to complete a survey about Alzheimer’s disease either online or over the phone. Please see the information below to learn more.
What to expect from your participation?
Participation is voluntary. Below are the different steps in the study:
- The first step in our study is a letter sent to thousands of households in northern Manhattan, describing the study and containing a website link and a telephone number to call. When you go to the website or call, we will ask a few questions to see if you are eligible and if so, you will be invited to complete a survey.
- After completing this survey, participants will be invited to complete the Introductory Session where they learn about Alzheimer's disease, genetics, and the next study steps. Those who wish to continue will sign a consent form.
- Participants will receive genetic testing for the gene APOE.
- Participants will attend a “Risk Evaluation Session” online or on the telephone with a genetic counselor. At this session, they will learn about their risk of developing Alzheimer’s disease by age 85. Participants will be placed at random (like the flip of a coin) into one of two groups. Depending on which group they are in, they will receive risk information based on their family history or their family history plus their gene test result. Those who receive information based only on their family history will get their gene test results at the end of the study.
- Participants will be asked to participate in a series of surveys, and for some participants, a series of in-depth interviews. Surveys (and interviews) are done before the Risk Evaluation Session as well as at 6 weeks, 9 months, and 18 months after the Risk Evaluation Session.
For taking a part in this study, participants can receive:
- $30 for each survey completed (four surveys, up to $120)
- $25 for returning the buccal (i.e., cheek) swab kit to the genetic testing company
- $75 for attending the Risk Evaluation Session with a genetic counselor
- $100 for each interview completed (four interviews, up to $400 for selected participants).