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Dominantly Inherited Alzheimer Network (DIAN)

Start: January 2009
End: July 2024
Enrollment: 600

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?

Minimum Age: 18 Years

Maximum Age: N/A

Must have:

  • Child 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.

Study Contact
DIAN Global Coordinator
314-747-1940
olivera@abraxas.wustl.edu

Need Help?

Contact NIA’s Alzheimer’s and related Dementias Education and Referral (ADEAR) Center at 800-438-4380 or email ADEAR.

Where Is This Study Located?

Florida
Mayo Clinic Jacksonville
Jacksonville, FL 32224
Recruiting
Sochenda Chea, BHA CRC
904-953-3234
chea.sochenda@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
Paige Sparks, BA
617-643-7799
kpsparks@bwh.harvard.edu
Missouri
Washington University 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
Katie Neimeyer
212-305-5909
Kn2416@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