Taylor Jack Carson, Heuer Hilary W, Clark Annie L, Wise Amy B, Manoochehri Masood, Forsberg Leah, Mester Carly, Rao Meghana, Brushaber Daniell, Kramer Joel, Welch Ariane E, Kornak John, Kremers Walter, Appleby Brian, Dickerson Bradford C, Domoto-Reilly Kimiko, Fields Julie A, Ghoshal Nupur, Graff-Radford Neill, Grossman Murray, Hall Matthew Gh, Huey Edward D, Irwin David, Lapid Maria I, Litvan Irene, Mackenzie Ian R, Masdeu Joseph C, Mendez Mario F, Nevler Naomi, Onyike Chiadi U, Pascual Belen, Pressman Peter, Rankin Katherine P, Ratnasiri Buddhika, Rojas Julio C, Tartaglia Maria Carmela, Wong Bonnie, Gorno-Tempini Maria Luisa, Boeve Bradley F, Rosen Howard J, Boxer Adam L, Staffaroni Adam M
Department of Neurology, Memory and Aging Center, University of California, San Francisco Weill Institute for Neurosciences San Francisco California USA.
Department of Neurology Columbia University New York New York USA.
Alzheimers Dement (Amst). 2023 May 9;15(2):e12423. doi: 10.1002/dad2.12423. eCollection 2023 Apr-Jun.
Remote smartphone assessments of cognition, speech/language, and motor functioning in frontotemporal dementia (FTD) could enable decentralized clinical trials and improve access to research. We studied the feasibility and acceptability of remote smartphone data collection in FTD research using the ALLFTD Mobile App (ALLFTD-mApp).
A diagnostically mixed sample of 214 participants with FTD or from familial FTD kindreds (asymptomatic: CDR®+NACC-FTLD = 0 [ = 101]; prodromal: 0.5 [ = 49]; symptomatic ≥1 [ = 51]; not measured [ = 13]) were asked to complete ALLFTD-mApp tests on their smartphone three times within 12 days. They completed smartphone familiarity and participation experience surveys.
It was feasible for participants to complete the ALLFTD-mApp on their own smartphones. Participants reported high smartphone familiarity, completed ∼ 70% of tasks, and considered the time commitment acceptable (98% of respondents). Greater disease severity was associated with poorer performance across several tests.
These findings suggest that the ALLFTD-mApp study protocol is feasible and acceptable for remote FTD research.
The ALLFTD Mobile App is a smartphone-based platform for remote, self-administered data collection.The ALLFTD Mobile App consists of a comprehensive battery of surveys and tests of executive functioning, memory, speech and language, and motor abilities.Remote digital data collection using the ALLFTD Mobile App was feasible in a multicenter research consortium that studies FTD. Data was collected in healthy controls and participants with a range of diagnoses, particularly FTD spectrum disorders.Remote digital data collection was well accepted by participants with a variety of diagnoses.
通过智能手机对额颞叶痴呆(FTD)患者的认知、言语/语言和运动功能进行远程评估,有助于开展去中心化临床试验并增加研究参与机会。我们使用ALLFTD移动应用程序(ALLFTD-mApp)研究了在FTD研究中通过智能手机远程收集数据的可行性和可接受性。
选取了214名FTD患者或来自家族性FTD家系的参与者(诊断情况混合:无症状:CDR®+NACC-FTLD = 0 [n = 101];前驱期:0.5 [n = 49];有症状:≥1 [n = 51];未测量 [n = 13]),要求他们在12天内使用智能手机三次完成ALLFTD-mApp测试。他们还完成了智能手机熟悉程度和参与体验调查。
参与者能够在自己的智能手机上完成ALLFTD-mApp测试。参与者表示对智能手机熟悉程度高,完成了约70%的任务,并认为时间投入是可以接受的(98%的受访者)。在多项测试中,疾病严重程度越高,表现越差。
这些发现表明,ALLFTD-mApp研究方案对于FTD远程研究是可行且可接受的。
ALLFTD移动应用程序是一个基于智能手机的远程自我管理数据收集平台。ALLFTD移动应用程序包含一系列全面的调查以及执行功能、记忆、言语和语言、运动能力测试。在一个研究FTD的多中心研究联盟中,使用ALLFTD移动应用程序进行远程数字数据收集是可行的。数据收集对象包括健康对照以及一系列诊断的参与者,尤其是FTD谱系障碍患者。远程数字数据收集得到了各种诊断参与者的广泛接受。