P2‐430: MR SPECTROSCOPY FROM FRONTAL LOBE AND POSTERIOR CINGULATE GYRUS IN ASYMPTOMATIC AND SYMPTOMATIC MICROTUBULE‐ASSOCIATED PROTEIN TAU (MAPT) MUTATION CARRIERS
Alzheimer's & Dementia | October 22, 2018 | Volume: 14 | Issue: 7S_Part_16 | Pages: No page available
P1‐420: ACCELERATED NEUROCHEMICAL CHANGES PRIOR TO PHENOCONVERSION TO FRONTOTEMPORAL LOBAR DEGENERATION IN PRESYMPTOMATIC MICROTUBULE‐ASSOCIATED PROTEIN TAU (MAPT) MUTATION CARRIERS: A LONGITUDINAL MRS STUDY
Alzheimer's & Dementia | October 22, 2018 | Volume: 14 | Issue: 7S_Part_8 | Pages: No page available
Abstract [Background] Patient advocates bring a unique, valuable perspective and presence to SPOREs. However, although patient advocates are recommended members of SPORE grants, guidelines are not given on the role of advocates or on measurement of the performance of advocates. [Methods] The Mayo Clinic Breast Cancer SPORE Patient Advocate Advisory Committee has developed a participation measurement tool. This tool will underpin and augment evaluations of the individual advocate contributions by the program PI and the SPORE project leaders. The Advocate Advisory Committee Chair will review the evaluations with the individual advocates. Annually, the advocate committee will review the performance of the group by the standard of the metrics. [Results] Advocates kept a log of their SPORE activities for four months then worked with a statistician to discern patterns of measurable, evaluable behaviors. The determined evaluable areas are training, scientific activity, meeting attendance, communication. Currently, those metrics are being tracked. Advocates developed the metrics together and report activities at the monthly advocate meetings. Currently, activities are simply tracked and categorized. No minimum standards are set. This will be the third step in the development of the metrics. [Conclusions] This approach is the first step in the development of meaningful evaluation of advocate SPORE activities. It quantifies the participation of advocates in the SPORE and provides the basis for developing a qualitative performance evaluation. The SPORE PI and the Committee Chair will use the evaluations to interpret the involvement of advocates in SPORE research and activities and to plan interventions to strengthen the advocate contributions to the SPORE. Citation Format: Cynthia Chauhan, Wayland Eppard, Lori Denison, Debra Gearhart, Lawanna Holmes, Ruth Kraft, Linda Miller, Mary A Sitta, Mary L Smith, James Ingle, Matthew Goetz. Measurements of advocate participation in and contributions to the Mayo Clinic breast cancer SPORE [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-09-04.