The ACTC-DS repository is under review for potential modification in compliance with Administration directives.

Alzheimer’s Clinical Trials Consortium -Down Syndrome (ACTC-DS)

MISSION

Our mission is to provide an optimal infrastructure, utilizing centralized resources and shared expertise, to accelerate the development of effective interventions for Alzheimer’s disease in Down syndrome.

An older woman with her arm around a smiling young woman who has Down syndrome, the two standing close together outdoors.

A man in a plaid shirt and gray vest speaks into a microphone during a panel discussion, gesturing with his hands.

Attendees seated at a long conference table work on laptops and take notes during a meeting.

A man in a gray fleece speaks and gestures during a group discussion at a conference table, with other attendees and laptops around him.

Efficient

Through centralization of resources and processes, we develop and utilize efficient solutions.

Innovative

We consider novel clinical trial designs, leveraging innovative cognitive, biomarker, neuroimaging outcomes, and data sharing.

Diverse

Our Education, Engagement, Access, and Accountability (E2A2) Unit promotes inclusion in all ACTC activities.

Experienced

Our investigators and sites have extensive experience conducting and enrolling DSAD clinical trials.

Collaborative

With each clinical trial’s lead investigator, we build a strong collaborative team to design and conduct trials.

ACTC-DS Principal Investigator

“It is an incredibly exciting time in the Alzheimer’s field with many potential treatments being evaluated. We aim to bring the latest therapies to the DS community.”

Michael Rafii, MD, PhD

University of Southern California – Epstein Family Alzheimer’s Therapeutics Research Institute
(USC Epstein Family ATRI)

Michael S. Rafii, MD, PhD, is Medical Director of the Epstein Family Alzheimer’s Therapeutic Research Institute (ATRI) and Professor of Clinical Neurology at the Keck School of Medicine of USC. He earned his MD and PhD degrees from Brown University, conducted neurogenetics research at Harvard Medical School, completed his neurology residency at Johns Hopkins Hospital, and a fellowship in neurodegenerative diseases at the University of California, San Diego.

A physician-scientist, Dr. Rafii focuses on developing novel therapies for Alzheimer’s disease, including the genetic form affecting individuals with Down syndrome. He is Principal Investigator of the NIH-funded Alzheimer’s Clinical Trials Consortium–Down Syndrome (ACTC-DS), leading several international clinical trials.

Dr. Rafii conducted the first study of Alzheimer’s biomarkers in people with Down syndrome, the Down Syndrome Biomarker Initiative (DSBI), which confirmed that DS-AD is nearly identical to the other forms of Alzheimer’s disease. He also directs the Medical Safety Unit of the Alzheimer’s Clinical Trials Consortium (ACTC), overseeing the safety and conduct of its entire portfolio of trials.

He serves as Co-Director of the Clinical Core of the Alzheimer’s Disease Neuroimaging Initiative (ADNI) and as Co-Principal Investigator of the Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET).

Dr. Rafii is the author of two neurology review books, First Aid for the Neurology Boards and First Aid for the Neurology Clerkship. His work has been featured in The New York Times, The Washington Post, The Wall Street Journal, the Chicago Tribune, The Economist, and NPR. He served as Medical Advisor to the Netflix documentary Remembering Gene Wilder and the Emmy Award–winning shows Grey’s Anatomy and This Is Us.

Previously, he was Medical Director of the Alzheimer’s Disease Cooperative Study, Director of the Memory Disorders Clinic, Founding Director of the Adult Down Syndrome Clinic, Director of the Comprehensive Alzheimer’s Program, Director of the Adult Neurology Residency Program, and Associate Professor of Neurology at the University of California, San Diego.

Participant Voices