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Browsing by Author "Fargo, Keith N."
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Item Patient and caregiver assessment of the benefits from the clinical use of amyloid PET imaging(Wolters Kluwer, 2018-01) Mustafa, Rafid; Brosch, Jared R.; Rabinovici, Gil D.; Dickerson, Brad; Carrillo, Maria C.; Glazier, Brad; Gao, Sujuan; Tierney, Martha; Fargo, Keith N.; Austrom, Mary G.; De Santi, Susan; Clark, David G.; Apostolova, Liana; Neurology, School of MedicineINTRODUCTION: Few studies to date have explored patient and caregiver views on the clinical use of amyloid positron emission tomography (PET). METHODS: A 7-item questionnaire assessing patient and caregiver views (510 total respondents) toward amyloid PET imaging was advertised broadly through alz.org/trialmatch. RESULTS: We received 510 unique responses from 48 US states, 2 Canadian provinces, the Dominican Republic, and Greece. Both patients and caregivers indicated that they would want to receive amyloid imaging if offered the opportunity. Over 88% of respondents had a positive response (∼10% with neutral and 2% with negative responses) to whether amyloid PET should be offered routinely and be reimbursed. Such information was felt to be useful for long-term legal, financial, and health care planning. Respondents identifying with early age cognitive decline (younger than 65 y) were more likely to explore options for disability insurance (P=0.03). Responders from the Midwest were more likely to utilize information from amyloid imaging for legal planning (P=0.02), disability insurance (P=0.02), and life insurance (P=0.04) than other US regions. DISCUSSION: Patients and caregivers supported the use of amyloid PET imaging in clinical practice and felt that the information would provide significant benefits particularly in terms of future planning.Item The Longitudinal Early-onset Alzheimer’s Disease Study (LEADS): Framework and methodology(Wiley, 2021) Apostolova, Liana G.; Aisen, Paul; Eloyan, Ani; Fagan, Anne; Fargo, Keith N.; Foroud, Tatiana; Gatsonis, Constantine; Grinberg, Lea T.; Jack, Clifford R., Jr.; Kramer, Joel; Koeppe, Robert; Kukull, Walter A.; Murray, Melissa E.; Nudelman, Kelly; Rumbaugh, Malia; Toga, Arthur; Vemuri, Prashanthi; Trullinger, Amy; Iaccarino, Leonardo; Day, Gregory S.; Graff-Radford, Neill R.; Honig, Lawrence S.; Jones, David T.; Masdeu, Joseph; Mendez, Mario; Musiek, Erik; Onyike, Chiadi U.; Rogalski, Emily; Salloway, Steve; Wolk, David A.; Wingo, Thomas S.; Carrillo, Maria C.; Dickerson, Bradford C.; Rabinovici, Gil D.; LEADS Consortium; Neurology, School of MedicinePatients with early‐onset Alzheimer's disease (EOAD) are commonly excluded from large‐scale observational and therapeutic studies due to their young age, atypical presentation, or absence of pathogenic mutations. The goals of the Longitudinal EOAD Study (LEADS) are to (1) define the clinical, imaging, and fluid biomarker characteristics of EOAD; (2) develop sensitive cognitive and biomarker measures for future clinical and research use; and (3) establish a trial‐ready network. LEADS will follow 400 amyloid beta (Aβ)‐positive EOAD, 200 Aβ‐negative EOnonAD that meet National Institute on Aging–Alzheimer's Association (NIA‐AA) criteria for mild cognitive impairment (MCI) or AD dementia, and 100 age‐matched controls. Participants will undergo clinical and cognitive assessments, magnetic resonance imaging (MRI), [18F]Florbetaben and [18F]Flortaucipir positron emission tomography (PET), lumbar puncture, and blood draw for DNA, RNA, plasma, serum and peripheral blood mononuclear cells, and post‐mortem assessment. To develop more effective AD treatments, scientists need to understand the genetic, biological, and clinical processes involved in EOAD. LEADS will develop a public resource that will enable future planning and implementation of EOAD clinical trials.