Dominantly Inherited Alzheimer Network (DIAN)

What Is This Study About?

This study will identify the biological changes that occur in the development of Alzheimer's disease to improve early diagnosis and to track progression of the disease. Researchers will collect biological information from adults who have parents a known inheritable, genetic mutation for Alzheimer's disease, specifically mutations in presenilin 1 (PSEN1), presenilin 2 (PSEN2), and amyloid precursor protein (APP) genes. Participants will undergo genetic testing, brain imaging, and provide blood and spinal fluid samples. Researchers will measure the amount of abnormal amyloid in the brain and spinal fluid, changes in brain size (e.g. shrinkage), and brain metabolism (energy processing). They will compare the changes that occur in participants with and without mild Alzheimer's symptoms, who may or may not have an Alzheimer's genetic mutation. All results will be stored in the Dominantly Inherited Alzheimer's Network (DIAN) Central Archive, an international database that allows qualified researchers to access and analyze the information. All information will be anonymized to ensure the privacy of the participants. Participants may choose to receive the results of their genetic test, and if so, will have access to genetic counseling at no cost.

Do I Qualify To Participate in This Study?

Must have:

• Child who is 18 years old or older of an individual with a known mutation for autosomal dominant Alzheimer's disease
• Cognitively normal; may allow enrollment of participants with very mild, mild, or moderate cognitive impairment
• Fluent at the 6th grade level in a language approved by investigators
• Has two people who are not siblings who can serve as sources for the study

Must NOT have:

• Medical or psychiatric illness that would interfere with completing initial and follow-up visits
• Requires nursing home level care

If I Qualify, Who Do I Contact?

Contact study personnel listed either under the general study contact or the location nearest you.

 

Where Is This Study Located?

Florida
Mayo Clinic Jacksonville Jacksonville, FL 32224 Recruiting Mary Imhansiemhonehi, MPH 904-953-4808 Imhansiemhonehi.Mary@mayo.edu
Indiana
Indiana University-Indiana Alzheimer Disease Center Indianapolis, IN 46202 Recruiting Jill Buck, RN 317-963-1847 jilmbuck@iu.edu
Massachusetts
Brigham and Women's Hospital Boston, MA 02115 Recruiting Colleen Fitzpatrick, MS 617-643-5200 cdfitzpatrick@bwh.harvard.edu
Missouri
Washington University in St. Louis School of Medicine Saint Louis, MO 63108 Recruiting Wendy Sigurdson, RN, MPH 314-362-2256 sigurdsonw@neuro.wustl.edu
New York
Columbia University New York, NY 10032 Recruiting Naara Ramirez-Estevez 212-305-9971 nr2837@cumc.columbia.edu
Pennsylvania
University of Pittsburgh Pittsburgh, PA 15260 Recruiting Zana Ikonomovic, MD 412-692-2740 ikonomovics@upmc.edu
Rhode Island
Butler Hospital Providence, RI 02906 Recruiting Courtney Bodge, PhD 401-455-6403 cbodge@butler.org

Who Sponsors This Study?

Lead: Washington University School of Medicine

Collaborator Sponsor

• National Institute on Aging (NIA)

Source: ClinicalTrials.gov ID: NCT00869817