Ask the Expert: Transparent Studies | Alzheimer's Prevention Registry

You are here

May 31, 2016

Ask the Expert: Transparent Studies

By Alzheimer's Prevention Bulletin

5-31-16 Asjktheexpert.jpg

Our May expert is Joshua D. Grill, PhD, Associate Director, Alzheimer’s Disease Research Center; Director of Education, Institute for Memory Impairments and Neurological Disorders; and Associate Professor, Department of Psychiatry and Human Behavior at the University of California, Irvine.

Dear Dr. Grill,

My Mom is interested in taking part in a “transparent” preclinical trial on Alzheimer’s disease. As part of the study, she would undergo Positron Emission Tomography, also called a PET scan. Because this is a transparent study, I understand she’ll receive the results of this PET scan. What kind of support should I seek for my Mom if the results show she has amyloid in her brain, a biomarker for Alzheimer’s? Are transparent studies becoming more common for Alzheimer’s disease?​

Dear Craig,

Thanks very much for your question. This is a really important issue. Learning amyloid PET scan results is not a decision that a person should take lightly. In fact, we don’t recommend that cognitively normal people seek out amyloid PET scan testing because we are still working to understand what the results of these tests truly mean. In the research setting, however, it’s clear that these scans position us to more efficiently test hypotheses as well as to more rapidly advance the science of Alzheimer’s disease treatment development.

While transparent designs are becoming more frequent in the research setting, the sharing of PET scan results is done very carefully. If she chooses to participate, your mother will have the opportunity to:

  • interact with experts;
  • ask questions about the biomarker test; and
  • learn more about what we do – and do not – know about what biomarkers tell us in people who have normal memories.

Only if she is confident about moving forward after these discussions will the test be performed and the results shared. If your mom does proceed, the results will be shared in a cautious, sensitive and confidential way.

If your mother learns she is eligible for the trial because the PET scan demonstrates elevated levels of amyloid in her brain, it’s important for her to remember that this does not mean she’ll develop Alzheimer’s dementia. Not everyone with elevated amyloid levels will develop dementia and, for those who do, it could be years or decades before memory problems begin.

Most importantly, regardless of her scan results, your mother should be proud of the remarkable contribution she is making to science. Together with people like her, we will find ways to prevent Alzheimer’s disease.