The Alzheimer's Disease Neuroimaging Initiative (ADNI) study protocol currently precludes disclosure of test results to participants. A survey among ADNI investigators, however, demonstrates that most want this policy changed, in light of the approval of 18F-florbetapir as a PET amyloid ligand. Should we tell the study participants if they want to know?
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References
Shulman, M. B., Harkins, K., Green, R. C. & Karlawish, J. Using AD biomarker research results for clinical care. Neurology http://dx.doi.org/10.1212/WNL.0b013e3182a55f4a.
Dubois, B. et al. Research criteria for the diagnosis of Alzheimer's disease: revising the NINCDS–ADRDA criteria. Lancet Neurol. 6, 734–746 (2007).
McKhann, G. M. et al. The diagnosis of dementia due to Alzheimer's disease: recommendations from the National Institute on Aging–Alzheimer's Association workgroups on diagnosis guidelines for Alzheimer's disease. Alzheimers Dement. 7, 263–269 (2011).
Albert, M. S. et al. The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging–Alzheimer's Association workgroups on diagnosis guidelines for Alzheimer's disease. Alzheimers Dement. 7, 270–279 (2011).
Sperling, R. A. et al. Towards defining the preclinical stages of Alzheimer's disease: Recommendations from the National Institute on Aging–Alzheimer's Association workgroups on diagnosis guidelines for Alzheimer's disease. Alzheimers Dement. 7, 280–292 (2011).
Johnson, K. A. et al. Appropriate use criteria for amyloid PET: a report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer's Association. Alzheimers Dement. 9, 1–15 (2013).
Soucy, J.-P. et al. Clinical applications of neuroimaging in patients with Alzheimer's disease: a review from the Fourth Canadian Consensus Conference on the Diagnosis and Treatment of Dementia 2012. Alzheimers Res. Ther. 5 (Suppl. 1), S3 (2013).
Carrillo, M. C. et al. Can we prevent Alzheimer's disease? Secondary “prevention” trials in Alzheimer's disease. Alzheimers Dement. 9, 123–131.e1 (2013).
Khachaturian, A., Snyder, P., Carillo, M. & Knopman, D. Developing a national institutional review board for neurodegenerative diseases. Alzheimers Dement. 8 (Suppl.), P141 (2012).
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Gauthier, S., Rosa-Neto, P. Disclosure of results to participants in dementia research. Nat Rev Neurol 9, 608–609 (2013). https://doi.org/10.1038/nrneurol.2013.213
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DOI: https://doi.org/10.1038/nrneurol.2013.213
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