Late Onset Alzheimer's Disease
LOAD
2 other identifiers
observational
10,000
1 country
12
Brief Summary
The goal of this study is to is to focus on the genetic influences on Alzheimer's Disease (AD) risk. The investigators are looking for families and/or individuals (affected or unaffected) of any ethic background (African American, Caucasian, and Hispanics) with a family history of AD and willing to participate.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Nov 2016
Longer than P75 for all trials
12 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
November 15, 2016
CompletedFirst Submitted
Initial submission to the registry
August 11, 2021
CompletedFirst Posted
Study publicly available on registry
August 18, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
April 30, 2027
ExpectedStudy Completion
Last participant's last visit for all outcomes
April 30, 2027
May 18, 2026
May 1, 2026
10.5 years
August 11, 2021
May 15, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Total number of genes identified to be associated with the risk of AD
Genetic Linkage Analysis to Identify Genes Associated with the risk of Alzheimer's Disease: Identification of genes by performing genetic linkage analysis, in order to detect the chromosomal location of genes that may increase the risk of Alzheimer's disease.
5 years
Study Arms (3)
Families with a history of Alzheimer's Disease
Families with two or more family members affected with Alzheimer's Disease
Un-related, non-demented controls
Un-related, non-demented healthy controls over age 55
Individuals with Dementia (Alzheimer's Disease)
Individuals with dementia over the age of 65
Interventions
Collection of blood samples for genetic testing
Memory Test
Eligibility Criteria
The investigators intend to recruit individuals from: 1) community-based studies; 2) the Alzheimer's Disease Research Center Memory Disorders Center; 3) the private offices of the study neurologists; 4) public recruitment; 5) referrals from the Alzheimer's Association; 6) referrals from the NCRAD; 7)previously unidentified members of existing families not previously recruited. The investigators will also use advertisements such as radio, television and newspapers.
You may qualify if:
- Established diagnosis of definite or probable AD or have a diagnosis of a related neurodegenerative disorder such as Frontotemporal Dementia (FTD) or Lewy Body Dementia (LBD) (will also recruit sporadic FTD and LBD) cases.
- a living sibling with probable or possible AD;
- a third living relative affected with AD (onset age 50 or older) or unaffected (60 or older);
- participants in the proband's generation with an identified companion serving as an informant;
- participants who have capacity to consent or participants lacking capacity to consent with a surrogate/proxy in place to provide consent.
You may not qualify if:
- failure to identify an appropriate informant;
- uncertainty of the clinical diagnosis of Alzheimer's disease or other related disorder;
- discovery of additional diagnosis that could account for the clinical manifestations;
- unwillingness to participate;
- failure to identify a living sibling with AD or other related disorder (except in the cases of sporadic FTD and sporadic LBD);
- participants lacking the capacity to consent who do not have a surrogate or proxy or next of kin to provide consent.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Columbia Universitylead
- National Institute on Aging (NIA)collaborator
Study Sites (12)
University of Washington
Washington D.C., District of Columbia, 98105, United States
University of Miami
Miami, Florida, 33124, United States
Rush University
Aurora, Illinois, 60612, United States
Indiana University
Bloomington, Indiana, 47405, United States
NCRAD at Indiana University
Indianapolis, Indiana, 46202, United States
Mayo Clinic
Rochester, Minnesota, 55901, United States
Joanne Norton
St Louis, Missouri, 63130, United States
Columbia University Irving Medical Center
New York, New York, 10032, United States
North Carolina State University
Raleigh, North Carolina, 27695, United States
University of Pittsburgh
Pittsburgh, Pennsylvania, 15213, United States
University of Texas Southwestern
Dallas, Texas, 75390, United States
University of Washington
Seattle, Washington, 98195, United States
Biospecimen
Blood and samples from autopsy/brain tissue.
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Richard P. Mayeux, MD, MSc
Columbia University
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- FAMILY BASED
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
August 11, 2021
First Posted
August 18, 2021
Study Start
November 15, 2016
Primary Completion (Estimated)
April 30, 2027
Study Completion (Estimated)
April 30, 2027
Last Updated
May 18, 2026
Record last verified: 2026-05
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL
- Time Frame
- The data is currently available
- Access Criteria
- When requesting samples to NCRAD the "Master Agreement for Transfer of Materials to NCRAD" and related Appendix A must be completed prior to the transfer of any samples. The Master Material Transfer Agreement (MTA) agreement is between the Institutions and is not Investigator specific. Therefore, if you think your Institution may already have a Master MTA in place with NCRAD.
Data is stored in a secured database at Columbia University and de-identified data will be sent to the National Cell Repository for Alzheimer's disease. DNA will be stored at the National Cell Repository for Alzheimer's disease (NCRAD) at Indiana University. In addition to the blood sample, year of birth, family history of dementia, and diagnosis will be sent to NCRAD. DNA and associated clinical and demographic data will be made available to qualified and approved researchers studying the genetics of AD, aging, and related disorders. If the participant agrees, his/her de-identified samples and data will be made available to investigators studying the genetics of any human disease. Identity of participants will not be shared with NCRAD or with any investigators.