Episode 140: Down Syndrome and Alzheimer’s: Clinical Trials, Equity, and Patient-Centered Progress

Elizabeth Head, PhD

Episode 140 of the NeurologyLive^® Mind Moments^® podcast is now live! Scroll down to listen or click here to subscribe on your favorite streaming service.

The Mind Moments podcast features exclusive interviews with leaders in the field discussing the latest research and disease management strategies across the breadth of neurology, including epilepsy, multiple sclerosis, Parkinson disease, dementia, sleep disorders, and more.

In this episode, "Down Syndrome and Alzheimer’s: Clinical Trials, Equity, and Patient-Centered Progress," Elizabeth Head, PhD, professor in the department of Pathology and Laboratory Medicine at the University of California, Irvine, discussed the evolving intersection of Down syndrome and Alzheimer disease using updates from the Alzheimer Biomarker Consortium – Down Syndrome (ABC-DS). She detailed how outcome assessments have been refined to meet the unique cognitive profiles of individuals with Down syndrome and shared the progress in launching clinical trials that now include this historically excluded population. Head also addressed the challenges in distinguishing developmental delay from early dementia symptoms, the potential role of anti-amyloid therapies, and how non-pharmacological interventions like sleep apnea treatment may contribute to cognitive preservation. She emphasized the importance of equitable research participation, clinician education, and understanding patient priorities—like independence and respect—when supporting individuals with Down syndrome and their families.

The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here:

• GENERATION HD2 Trial of Huntington Agent Tominersen Amended to Include Only Higher Dose
• FDA Grants Authorization to Epiminder’s Implantable Continuous EEG Monitor for Epilepsy Treatment
• FDA Approves FcRn Blocker Nipocalimab for Broad Forms of Generalized Myasthenia Gravis

EPISODE BREAKDOWN

• 1:00 – Overview of the ABC-DS initiative and the growing inclusion of Down syndrome in Alzheimer research
• 2:00– Current state of clinical trials and progress in therapeutic development for this population
• 3:30 – Evolution of outcome assessments tailored for individuals with Down syndrome
• 5:40 – Challenges in distinguishing Down syndrome traits from signs of early dementia
• 7:40 – Clinician educations needs and improving access to specialized care
• 9:00 – Neurology News Minute
• 11:00 – Eligibility and considerations for anti-amyloid therapies in Down syndrome
• 13:35 – Research gaps, co-occurring conditions, and the importance of reaching underserved populations
• 16:40 – Top priorities from patients and families: independence, inclusion, and respect in care settings

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