Karlawish J, Kim SY, Knopman D, van Dyck CH, James BD, Marson D. Interpreting the clinical significance of capacity scores for informed consent in Alzheimer disease clinical trials. Am J Geriatr Psychiatry. 2008 Jul;16(7):568-74. PubMed.

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  1. Ms. Sharav's stance astounds me. Left unchecked, a patient with AD has little to no opportunity for improvement. By participating in a clinical trial, the patient at least has a chance of improvement in quality of life. Why deny that to this population? Common sense dictates that most, when given a virtual death sentence, would opt to try an experimental treatment if available. Those with AD should have the same rights to clinical trials as those with cancer, heart disease, or any other life-threatening illness. Next-of-kin should suffice for consent purposes, just as in most other medical situations.

    View all comments by J. Lucy Boyd

  2. The problem of consent has been troubling me in Israel for the last few years. At what stage do we have to stop performing research on demented persons, even with consent of family members? The local IRBs have been increasingly demanding that the demented have guardianship before signing a consent form. This has even been extended to having a guideline to include a proxy/guardian for persons only with MCI.

    Researchers worldwide have to find a means of bringing the problem to the forefront of dementia research.

    View all comments by Gary Sinoff

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  1. AD Research Participation: Informed Consent Complicates Trials, Part 2