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ConnectEP: The smartphone app connecting people with epilepsy to researchers and neurologists

ConnectEP：智能手机应用程序将癫痫患者与研究人员和神经科医生联系起来

基本信息

批准号：
60469
负责人：
金额：
$ 9.53万
依托单位：
NEURONOSTICS LIMITED
依托单位国家：
英国
项目类别：
Feasibility Studies
财政年份：
2020
资助国家：
英国
起止时间：
2020 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=60469
关键词：
ConnectEP smartphone app connecting people

项目摘要

We will develop a mobile app for people with epilepsy. The app will empower people with epilepsy to best manage their condition within the home environment, whilst contributing to their sense of purpose through voluntary epilepsy research involvement. In response to the COVID-19 crisis, we conducted a global survey of people with epilepsy. We received over 150 responses, including nearly 100 from the UK alone, between April 7th and 14th. Our survey revealed concerns about the impact of isolation on stress, mental health and anxiety, memory and sleep, with consequences for drug adherence and seizure control. Our survey further revealed connecting with researchers and healthcare providers as important priorities for people with epilepsy. Being empowered with relevant information and contributing both to management of their own condition and a broader research effort to understand epilepsy, were considered very important for reducing the impact of isolation due to COVID-19.#ConnectEP will be developed in partnership with globally renowned epilepsy advocates, researchers, clinicians and charity partners. It will be an important resource for delivering up-to-date information, recording relevant information, access to latest research findings, and the ability to contribute to research and clinical studies. In response to the challenges of isolation raised by COVID-19, raised by our community survey, our immediate focus will be on stress and mental health, drug adherence, sleep and seizure occurrence.During the initial phase of the project, we have connected with a number of charities and organisations who are interested in developing data-driven projects, but who have not been able to develop sustainable business models around these. Extension for Impact funding will enable us to explore and formalise these relationships with partners whose missions are synergetic with the #ConnectEP app. As an example, during the initial phase of the project, we have developed a partnership with a leading UK research charity. #ConnectEP will provide a direct connection between the app’s user base and researchers who are either seeking funding from the charity or seeking participants for charity-funded projects. With this bespoke functionality, #ConnectEP will enable people with epilepsy to engage directly with researchers linked with the charity to help prioritise ideas for funding or become involved in studies.

我们将为癫痫患者开发一款移动的应用程序。该应用程序将使癫痫患者能够在家庭环境中最好地管理他们的病情，同时通过自愿参与癫痫研究来增强他们的目的感。为应对COVID-19危机，我们对癫痫患者进行了全球调查。在4月7日至14日期间，我们收到了150多份回复，其中仅英国就有近100份。我们的调查显示，人们担心隔离对压力、心理健康和焦虑、记忆和睡眠的影响，以及对药物依从性和癫痫控制的影响。我们的调查进一步揭示了与研究人员和医疗保健提供者的联系是癫痫患者的重要优先事项。被赋予相关信息，并有助于管理自己的病情和更广泛的研究工作，以了解癫痫，被认为是非常重要的，以减少由于COVID-19隔离的影响。ConnectEP将与全球知名的癫痫倡导者、研究人员、临床医生和慈善合作伙伴合作开发。它将成为提供最新信息、记录相关信息、获取最新研究成果以及为研究和临床研究做出贡献的重要资源。为应对社区调查所提出的COVID-19带来的隔离挑战，我们将立即关注压力和心理健康、药物依从性、睡眠和癫痫发作发生率。在项目的初始阶段，我们与许多有兴趣开发数据驱动项目的慈善机构和组织建立了联系，但他们未能围绕这些项目开发可持续的商业模式。Impact基金的延期将使我们能够探索并正式确定与合作伙伴的关系，这些合作伙伴的使命与#ConnectEP应用程序协同。例如，在项目的初始阶段，我们与英国领先的研究慈善机构建立了合作伙伴关系。#ConnectEP将在应用程序的用户群和正在寻求慈善机构资助或寻求慈善资助项目参与者的研究人员之间提供直接联系。有了这个定制的功能，#ConnectEP将使癫痫患者能够直接与慈善机构的研究人员接触，以帮助优先考虑资助或参与研究的想法。