Joining Clinical and Research Trials in Alzheimer


Caregivers can go two ways about signing up the person with Alzheimer’s disease that they care for for a clinical trial. One is to find an Alzheimer’s Disease Center (ADC) near them.

The National Institute on Aging sponsors ADCs at leading medical institutions in several states of the Union.

Alzheimer’s Disease Center by State






·         Arizona

Arizona Alzheimer’s Disease Center/Sun Health Research Institute

Eric Reiman, M.D., Director
Arizona Alzheimer's Disease Center
Banner Alzheimer's Institute
901 E. Willeta Street
Phoenix, AZ 85006
Information Line: 602-239-6500
Director's e-mail: [email protected]
Director's Tel: 602-239-6999
Director's Fax: 602-239-6253




































·         California

University of California, Davis

Charles S. DeCarli, M.D., Director
Alzheimer's Disease Center
University of California, Davis Medical Center
4860 Y Street, Suite 3700
Sacramento, CA 95817-4540
Information Line: 916-734-5496
Director's e-mail: [email protected]
Fax: 916-703-5290

University of California, Irvine

Frank LaFerla, Ph.D., Director
Alzheimer's Disease Research Center
University of California, Irvine
3212 BS III
Irvine, CA 92697-4545
Information Line: 949-824-5847
Director's e-mail: [email protected]
Director's Tel: 949-824-1232
Director's Fax: 949-824-2447

University of California, Los Angeles

Dale E. Bredesen, M.D.
Alzheimer's Disease Research Center
10911 Weyburn Avenue, Ste. 200
Los Angeles, CA 90095-1769
Information Line: 310-794-3665
Director's e-mail: [email protected]
Director's Fax: 310-794-3148

University of California, San Diego

Douglas R. Galasko, M.D., Director
Alzheimer's Disease Research Center
Department of Neurosciences
UCSD School of Medicine
9500 Gilman Drive (0948)
La Jolla, CA 92093-0948
Information Line: 858-622-5800
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Center Fax: 858-622-1017

University of California, San Francisco

Bruce Miller, M.D., Director
Alzheimer's Disease Research Center
University of California, San Francisco
Box 1207
675 Nelson Rising Lane
San Francisco, CA 94143-1207
Information Line: 415-476-6880
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Director's Tel: 415-476-5569
Director's Fax: 415-476-4800

University of Southern California

Helena Chui, M.D., Director
Alzheimer's Disease Research Center
University of Southern California
Health Consultation Center
1510 San Pablo Street, HCC643
Los Angeles, CA 90033
Information Line: 323-442-7600
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Director's Tel: 323-442-7686
Director's Fax: 323-442-7689




·         Florida

Mayo Clinic in Florida

Neill Graff-Radford, M.D., Associate Director
Memory Disorder Clinic
4500 San Pablo Road
Jacksonville, FL 32224
Center Tel: 904-953-6523






·         Georgia

Emory University

Allan I. Levey, M.D., Ph.D., Director
Alzheimer's Disease Center
Wesley Woods Health Center, 3rd Floor
1841 Clifton Road
Atlanta, GA 30329
Information Line: 404-728-6950
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Director's Tel: 404-727-7220
Fax: 404-727-3999












·         Illinois

Northwestern University

M.-Marsel Mesulam, M.D., Director
Cognitive Neurology and Alzheimer's Disease Center
Feinberg School of Medicine
Northwestern University
675 N St. Claire, Galter 20-100
Chicago, IL 60611
Information Line: 312-926-1851
Director's e-mail: [email protected]
Director's Tel: 312-908-9339
Director's Fax: 312-908-8789

Rush University Medical Center

David A. Bennett, M.D., Director
Alzheimer's Disease Center
Rush University Medical Center
Armour Academic Center
600 South Paulina Street, Suite 1028
Chicago, IL 60612
Information Line: 312-942-3333
Director's e-mail: [email protected]
Center's Fax: 312-563-4605







·         Indiana

Indiana University

Andrew Saykin, PsyD., ABCN, Director
Indiana Alzheimer Disease Center
IU Health Neuroscience Center, Suite 4100
Indiana University School of Medicine
355 West 16th Street
Indianapolis, IN 46202
Information Line: 317-274-1590
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Director's Tel: 317-963-7501
Director's Fax: 317-963-7547







·         Kansas

University of Kansas

Russell H. Swerdlow, M.D., Director
Alzheimer’s Disease Center
University of Kansas School of Medicine
Department of Neurology
2100 West 36th Ave, Suite 110
Kansas City, KS 66160
Information Line: 913-588-0555
ADC Email: [email protected]
Director’s Email: [email protected]
Director’s Tel: 913-588-8055
Director’s Fax: 913-945-5035






·         Kentucky

University of Kentucky

Linda Van Eldik, Ph.D., Director
University of Kentucky Alzheimer's Disease Center
Sanders-Brown Center on Aging, Rm. 101
800 South Limestone St.
Lexington, KY 40536-0230
Information Line: 859-323-6040
Director’s e-mail: [email protected]
Director’s Tel: 859-257-1412, ext. 271
Fax: 859-323-2866






·         Maryland

The Johns Hopkins University

Marilyn Albert, Ph.D., Director
Alzheimer's Disease Research Center
Division of Neuropathology
The Johns Hopkins University Medical Institutions
558 Ross Research Building
720 Rutland Avenue
Baltimore, MD 21205-2196
Information Line: 410-502-5164
Director's e-mail: [email protected]
Director's Tel: 410-614-3040
Director's Fax: 410-502-2189













·         Massachusetts

Boston University

Neil William Kowall, M.D., Director
Alzheimer's Disease Center
VA Boston Healthcare System
Neurology Service (127)
150 South Huntington Avenue
Boston MA 02130
Information Line: 1-888-458-2823 (toll free)
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Director's Tel: 857-364-4831
Director's Fax: 857-364-4454

Massachusetts General Hospital/Harvard Medical School

Bradley T. Hyman, M.D., Ph.D., Director
Alzheimer's Disease Research Center
Massachusetts General Hospital
114 16th Street, Room 2009
Charlestown, MA 02129
Information Line: 617-726-3987
Director's e-mail: [email protected]
Director's Tel: 617-726-2299
Director's Fax: 617-724-1480






·         Minnesota

Mayo Clinic

Ronald Petersen, M.D., Ph.D., Director
Alzheimer's Disease Research Center
4111 Highway 52 North
Rochester, MN 55901
Information Line: 507-284-1324
ADC e-mail: [email protected]
Director's e-mail: [email protected]
Director's Tel: 507-538-0487
Director's Fax: 507-284-6012
Main Fax: 507-538-0878






·         Missouri

Washington University at St. Louis

John C. Morris, M.D., Director
Alzheimer's Disease Research Center
Washington University School of Medicine
Department of Neurology
4488 Forest Park Avenue, Suite 130
St. Louis, MO 63108-2293
Information Line: 314-286-2881
Director's e-mail: [email protected]
Director's Tel: 314-286-2881
Director's Fax: 314-286-2763


















·         New York

Columbia University

Scott Small, M.D., Director
Columbia University Alzheimer's Disease Center
630 West 168th Street, P&S 15-402
New York, NY 10032
Information Line: 212-305-2077
Director's e-mail: [email protected]
Director's Tel: 212-305-3300
Director's Fax: 212-305-5498

Mount Sinai School of Medicine

Mary Sano, Ph.D., Director
Alzheimer's Disease Research Center
Department of Psychiatry
Mount Sinai School of Medicine
One Gustave Levy Place, Box 1230
New York, NY 10029-6574
Information Line: 212-241-8329
Director's e-mail: [email protected]
Director's Tel: 718-741-4228
Fax: 718-562-9120

New York University

Steven H. Ferris, Ph.D., Director
NYU Langone Medical Center
Center of Excellence on Brain Aging
145 E 32nd St, 5th Floor
New York, NY 10016
Information Line: 212-263-8088
Director's e-mail: [email protected]
Director's Tel: 212-263-5703
Director's Fax: 212-263-6991






·         Oregon

Oregon Health and Science University

Jeffrey Kaye, M.D., Director
Aging and Alzheimer's Disease Center CR 131
Oregon Health and Science University
3181 SW Sam Jackson Park Road
Portland, OR 97239-3098
Information Line: 503-494-6695
Director's e-mail: [email protected]
Director's Tel: 503-494-6976
Director's Fax: 503-494-7499











·         Pennsylvania

University of Pennsylvania

John Q. Trojanowski, M.D., Ph.D., Director
Alzheimer's Disease Center
Department of Pathology and Laboratory Medicine
University of Pennsylvania School of Medicine
HUP, Maloney 3rd Floor
36th and Spruce Streets
Philadelphia, PA 19104-4283
Information Line: 215-662-7810
Director's e-mail: [email protected]
Director's Tel: 215-662-4708
Director's Fax: 215-349-5909

University of Pittsburgh

Oscar Lopez, M.D., Director
Alzheimer's Disease Research Center
University of Pittsburgh
Department of Neurology
3501 Forbes Ave, Ste 830
Pittsburgh, PA 15213
Information Line: 412-692-2700
Director's e-mail: [email protected]
Center's Fax: 412-692-2710






·         Texas

University of Texas, Southwestern Medical Center

Roger N. Rosenberg, M.D., Director
Alzheimer's Disease Research Center
Department of Neurology
University of Texas SW Medical Center
5323 Harry Hines Boulevard
Dallas, TX 75390-9129
Information Line: 214-648-9376
Director's e-mail: [email protected]
Director's Tel: 214-648-3239
Fax: 214-648-6824






·         Virginia

University of Pittsburgh Satellite Center:
University of Virginia Memory and Aging Clinic

Steven DeKosky, M.D., Director
Carol Manning, Ph.D., Co-Director
UVA Neurology
500 Ray C. Hunt Drive
Charlottesville, VA 22903
Center Tel: 434-243-5898
Co-Director’s e-mail: [email protected]







·         Washington

University of Washington

Thomas Montine, M.D., Ph.D., Director
Alzheimer's Disease Center
Harborview Medical Center
Department of Pathology
325 9th Avenue
Seattle, WA 981084
Information Line: 1-800-317-5382
ADC e-mail: [email protected]
Director's Telephone: 206-731-4106
Director's e-mail: [email protected]
Fax: 206-341-5249






·         Wisconsin

University of Wisconsin

Sanjay Asthana, MD, Director
University of Wisconsin Alzheimer's Disease Center
2500 Overlook Terrace
Madison, WI 53705
Information Line: 1-866-636-7764 or 608-256-1901 x12921
Director's e-mail: [email protected]
Director's Tel: 608-262-8597
Director's Fax: 608-263-7645


The other way is to use the Alzheimer’s Disease Education and Referral (ADEAR) Center clinical trial finder tool to find a study recruiting people like the one that you care for. This database allows users to click on a state in the map to see all trials in that particular state; use a search box to search by drug term or other name, age, or location; and browse through a number of featured trials. Generally speaking, there are two different types of clinical research; clinical studies and clinical trials.

Clinical research types

·         Studies

Group volunteers according to broad characteristics, observe in normal settings and compare changes over time. 

·         Trials

Test drugs, devices, and diet or lifestyle changes.


The following is a specific example of one of the many studies that can be found in the ADEAR database:


AC-1204 for Mild to Moderate Alzheimer's Disease


Brief description

This study will evaluate the effects of the compound AC-1204 on cognition, activities of daily living, quality of life, pharmacokinetic measures, and safety in people with mild to moderate Alzheimer's disease.


Patient qualifications

·         Minimum age: 66 y/o.

·         Maximum age: 90 y/o.

·         Gender: Both.

·         Healthy volunteers: No.











Inclusion criteria











·         Probable mild to moderate Alzheimer's dementia, with evidence from CT or MRI scan within the past 18 months and Wechsler Memory Scale-Logical Memory II score (CT or MRI scan may be conducted as part of the screening procedure).

·         Confirmed apolipoprotein E genotype prior to randomization.

·         Stable medical condition, with the exception of dementia, for at least 3 consecutive months prior to screening.

·         Permanent, English- or Spanish-speaking caregiver (not expected to change during the course of the study) who is willing to attend all visits, oversee the participant's compliance with study procedures, and report the participant's status.

·         Community dwelling (includes assisted living facilities but excludes long-term care nursing facilities).

·         Ability to read and write in English or Spanish.

·         Hearing, vision, and physical abilities adequate to perform the assessments.

·         Ability to ingest oral medication; prior and current use of medication that corresponds with protocol requirements.

·         Informed consent by participant or cognitively intact, legally acceptable representative.




















Exclusion criteria


















·         Cause of dementia other than Alzheimer's disease, as determined by CT or MRI scan within the past 18 months.

·         Prohibited medications: medium-chain, triglyceride-containing products; use of any other investigational agent within 60 days prior to screening.

·         Known allergy or hypersensitivity to milk or soy products.

·         Presence or history of advanced, severe, progressive or unstable disease of any type that could interfere with the study or put the participant at risk.

·         History or clinical laboratory evidence of moderate congestive heart failure; clinically significant ECG abnormalities at screening; history of new cardiovascular events within 6 months before baseline.

·         Systolic blood pressure (top number) of more than 165 mmHg; diastolic blood pressure (bottom number) of more than 95 mmHg; or drop of 20 mm Hg or more in systolic blood pressure upon standing upright from a seated position within 3 minutes at screening.

·         History of or current psychiatric illness, including: major depression, active suicidal thoughts within 6 months of screening, suicide attempt in the past 2 years; history of alcohol or drug abuse within the past 6 months.

·         Insulin-dependent diabetes.

·         Clinically significant anemia; clinically significant renal disease or insufficiency; history of severe liver disease or results of liver-function tests more than 2.5 times the upper limit of normal.

·         Fasting triglycerides are more than 2.5 times the upper limit of normal.

·         Clinically significant vitamin B12 deficiency within the past year.

·         History of significant gastrointestinal (GI) disease:

-        Inflammatory bowel disease, GI bleed, or peptic ulcer disease (any history).

-        Complicated reflux disease or severe GERD that is not well-controlled by medication (current history or within past 5 years).

-        Irritable bowel syndrome, diverticular disease, or chronic gastritis (diagnosis or acute event within past 5 years.

·         Donation of at least 2 units of blood within the past 2 months.

·         History of neoplasm or malignancies within 5 years prior to screening, except for basal cell or squamous cell carcinoma of the skin.

·         Clinically significant hypothyroidism.

·         Expected hospitalization and/or surgery during the course of the study.





Detailed description

In this Phase II/III study, participants will be randomized to take either the study drug, AC-1204, or a placebo for 6 months to determine the effects on cognitive status. The drug is a powder that will be mixed with water, other liquid, or soft food. AC-1204 is an experimental compound that targets the metabolic deficiencies and imbalances associated with Alzheimer’s disease by providing ketone bodies as an alternative energy source for brain cells that have defective glucose metabolism. This approach has been shown to safely improve cognitive function and memory in people with Alzheimer's disease and in preclinical animal models of dementia.



Locations (1 of 70)

·         Phoenix, Arizona.

·         Zip code: 85006.

·         Recruiting:

-        Name: Anne Marie Milliken.

-        Phone: 602-839-6944.

-        Email: [email protected].

Start date

March 2013.

End date

July 2015.

Overall status


Disease stage

·         Early.

·         Middle.




Additionally, caregivers can ask their doctors whether they know about local studies, search, look in newspapers and other media, or sigh up for a registry or matching service.

Registries and matching services

·         Alzheimer’s Association

This national, not for profit organization offers a TrialMatch service.


·         Research Match

Funded by the National Institutes of Health, this service helps match interested individuals with researchers. Sign up with an e-mail address and be invited to participate in many types of studies and trials.


·         Alzheimer’s Prevention Registry

An online community open to anyone over the age of 18 who wants to learn about and may want to participate in Alzheimer’s disease prevention studies.


When you find a study for which the person with Alzheimer’s disease that you provide care may qualify, get in touch with the study site or study coordinator. They will ask you and/or the patient a few questions and depending on the answers they will invite you to the study site. This could be a trial and error process, so if the patient does not meet the inclusion criteria, just keep looking and waiting. Conversely, if the person does qualify, they still have many factors to consider before they give their informed consent – a form they would have to sign stating that they have been explained what the trial entails understand it and agree to participate in it. Given the nature of Alzheimer, people with memory and thinking problems may not be able to give their informed consent. In that case, authorized legal representative or proxy – usually a relative who may or may not be the primary caregiver – may give permission, especially if they are granted the authority to do so by a durable power of attorney.

There are both pros and cons related to participating in an Alzheimer’s disease study.

Alzheimer’s disease clinical research



·         Access to new treatments before the FDA approves them – which may be more effective than the ones currently available.

·         Helping others who may be at risk for Alzheimer, including relatives.

·         Regular monitoring by professional healthcare providers.

·         Learning about the condition.

·         Getting information about support groups and resources.

·         Clinical trials may have potential side effects.

·         Participants may not directly benefit from the study – trials seldom have miraculous results, and it’s highly unlikely that a single drug can cure or prevent a complex condition like Alzheimer’s disease.

·         As a participant the person may be administered a placebo instead of the experimental treatment.

·         Studies may last days, weeks, months, or years, and may require the person –and their caregiver – to travel to different places including private research facilities, teaching hospitals, Alzheimer’s research centers, or doctors’ offices.


You can ask the researchers these questions to help you make up your mind about participating in a study or trial:

·         What’s the purpose?

·         What tests and treatments will be administered?

·         What are the risks?

·         What side effects may take place?

·         How long will the trial last?

·         How much time will each visit take?

·         When and where will testing be performed?

·         How often are the visits?

·         Can the person continue treatment for Alzheimer’s disease and other conditions as prescribed by the primary care provider?

·         How is the primary care provider going to be informed of participation in the study?

·         Does the trial compare standard and experimental treatments?

·         How will the study affect the patient’s daily activities?

·         When will the results be known?

·         What are the chances of getting a placebo?

·         Will expenses be reimbursed?

·         Is there financial remuneration?

Once consent has been given, clinical staff will screen the patient to check if he or she meets the requirements of the trial. Factors that are taken into account include age, stage of dementia, gender, genetic profile, family history, and whether or not the person has a study partner who can accompany them to future visits – which would more than likely be you, the caregiver. Being accepted in a study or trial bars the patient from participating in others, but being excluded from one does not equate exclusion from another.

This is what in goes on in a study or trial, in broad strokes:

·         The staff explains the study in detail – including purpose, duration, required procedures, risks, and potential benefits – and compiles more information about the patient.

·         Consent is given if the patient and/or legal representative agree to participate.

·         The patient is screened to see if they are eligible for the trial.

·         If accepted, a first visit known as ‘baseline’ is scheduled to perform cognitive and/or physical tests.

·         The patient is randomly assigned to a treatment or control group.

·         The patient and his or her relatives follow the procedures and notify the researchers of any problems.

·         Further cognitive, physical, or other evaluations and information-gathering may occur during follow-up visits.

·         The person continues seeing their primary care provider for the duration of the trial.

If you feel a bit wary about allowing your loved one with Alzheimer’s disease to participate in a clinical study or trial, rest assured that Congress and the federal government enforce safety protocols to protect participants.

Clinical research safeguards

·         Institutional Review Board

The IRB oversees every study site to make sure participants are not being subjected to unnecessary risks.

·         Data and Safety Monitoring Committee

The DMS monitors trials with potential safety concerns and may stop a trial if it finds that experimental treatment is ineffective or harmful.

·         Right to withdraw

Participants can leave the study at any time they want, even if they have given informed consent.

·         Privacy

Personal information must be kept private by researchers.