People who are alive with memory issues that started before the age of 65.
About the Study:
To date, researchers have identified several genes that increase the risk for early-onset AD (i.e., the genes PSEN1, PSEN2, and APP). Yet, these genes only explain approximately 10% of early-onset AD, meaning much of early-onset AD is unexplained.
The READR study has three goals. First, attempt to identify more genetic factors influencing early-onset AD. Second, understand how these genes influence the progression of AD. Lastly, understand the relationship between early and late-onset forms of AD. To do this, READR study researchers need the help of families like yours.
READR is recruiting families and individuals with members under the age of 65 who have dementia or are experiencing memory problems. The initial screening can be completed in person or over the phone. This assessment will provide information on other risk factors that could be potentially associated with Early Onset Alzheimer's Disease susceptibility.
NOTE: Due to the COVID-19 pandemic, researchers are currently completing large parts of these assessments through video conferencing (Zoom). Zoom is confidential and HIPAA compliant. Once the pandemic subsides researchers will resume in-person assessments.”
The purpose of this study is (1) to identify genetic factors that contribute to risk for or cause early-onset AD; (2) to understand how genetic factors influence the progression and course of early-onset AD; and (3) to understand the relationship between early and late-onset forms of AD.
What is Involved:
Eligibility is determined based on the cognitive status and age of participants and their family members. Participation includes family and medical history questionnaires, assessments of memory and cognitive performance, and a blood draw. With appropriate permission, researchers will request to speak to care partners or their representatives (usually spouses) to better understand memory and dementia history. Researchers usually seek to enroll anyone in the family with AD, dementia, or memory problems, regardless of age, as well as those without dementia if age is over 50. Most activities occur by either phone or video conferencing (i.e., Zoom). To perform the genetic tests a blood sample will be collected in-person by a phlebotomist. Researchers may request repeat contacts/interviews over time. This is to update you and your family on the progress of the study, and to obtain current information on any cognitive changes among you or your family.