Opinion: Clinical trials for Alzheimer’s treatments need to include people with Down syndrome
CMS must encourage the Down syndrome community to participate in clinical trials for Alzheimer's treatments.
“I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimer’s,” Frank Stephens, a self-advocate with Down syndrome, told Congress in 2017. His heart-wrenching comment, which was followed by thunderous applause and a standing ovation, got it exactly right.
People with Down syndrome have an extra copy of the 21st chromosome — the chromosome on which the gene that codes for amyloid precursor protein is located. The accumulation of amyloid plaque in the brain is associated with the development of Alzheimer’s. Though the amyloid theory of Alzheimer’s is controversial, one thing is clear: Around 70% of people with Down syndrome will be diagnosed with Alzheimer’s in their 40s and 50s.
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