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Families and individuals with members under the age of 65 who have dementia or are experiencing memory problems.
To date, researchers have identified several genes that increase the risk for Early Onset Alzheimer’s Disease (EOAD), i.e., the genes PSEN1, PSEN2, and APP. Yet, these genes only explain approximately 10% of EOAD, meaning that our understanding of causes and potential effective treatments of this form of the disease is still limited.
The National Institute on Aging Alzheimer's Disease Family Based Study (NIA-AD FBS)- has three main goals to increase our understanding of the disease. 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, NIA-AD FBS study researchers need the help of families like yours.
NIA-AD FBS 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 EOAD susceptibility.
NOTE: Researchers can complete large parts of these assessments in person or through video conferencing (Zoom). Zoom is confidential and HIPPA compliant.
The purpose of this study is to increase our understanding of EOAD by (1) identifying genetic factors that contribute to risk for or cause EOAD; (2) disentangling how genetic factors influence the progression and course of EOAD; and (3) disentangling the relationship between early and late-onset forms of AD.
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 can be done either in person, 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.