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P3‐007: Optimal Composite Volumetric MRI Endpoints in Longitudinal Studies of Neurodegenerative Disease: Proof‐of‐Concept Demonstration in Primary Progressive Aphasia
Author(s) -
Edland Steven D.,
Sridhar Jaiashre,
Cobia Derin,
Martersteck Adam,
Mesulam M. Marsel,
Rogalski Emily J.
Publication year - 2016
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2016.06.1664
Subject(s) - primary progressive aphasia , atrophy , sample size determination , clinical trial , clinical endpoint , population , medicine , surrogate endpoint , biomarker , disease , pathology , statistics , mathematics , dementia , frontotemporal dementia , biochemistry , chemistry , environmental health
dures. Frequency of visits and total study length were rated similarly by the groups. In response to open-ended questions, African Americans more frequently mentioned financial compensation (23% vs. 14%) and returning of research results (19% vs. 6%) as potential incentives than Caucasians. In structured questions, African Americans reported that receiving personal cognitive test results, personal genetic test results, personal estimates for AD risk, and overall study results had greater impact than receiving personal lab reports or financial incentives. Overall, however, Caucasians were more likely than African Americans to base their decisions on the potential incentives that were studied. Conclusions:African Americans are less likely than Caucasians to express a willingness to enroll in preclinical AD trials. Further research is needed to identify and test potential incentives to increase willingness to participate in underserved populations to ensure equitable benefits of research.