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

我们将为癫痫患者开发一个移动应用程序。该应用程序将使癫痫患者能够在家庭环境中最好地管理自己的病情，同时通过自愿参与癫痫研究，促进他们的目标感。为应对COVID-19危机，我们对癫痫患者进行了一项全球调查。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，人们担心孤立对压力、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。我们的调查进一步显示，与研究人员和医疗保健提供者联系是癫痫患者的重要优先事项。获得相关信息并有助于管理自身病情和开展更广泛的研究工作以了解癫痫，被认为对减少因COVID-19而隔离的影响非常重要。#ConnectEP将与全球知名癫痫倡导者、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。为了应对COVID-19带来的隔离挑战，以及我们的社区调查提出的挑战，我们当前的重点将放在压力和心理健康、药物依从性、睡眠和癫痫发作上。在项目的初始阶段，我们与一些对开发数据驱动项目感兴趣的慈善机构和组织建立了联系，但他们无法围绕这些项目开发可持续的商业模式。“影响力”基金的扩展将使我们能够探索并正式确立与合作伙伴的关系，这些合作伙伴的使命与“#ConnectEP”应用程序具有协同作用。例如，在项目的初始阶段，我们与英国一家领先的研究慈善机构建立了合作关系。#ConnectEP将提供应用程序的用户群和研究人员之间的直接联系，这些研究人员要么从慈善机构寻求资金，要么为慈善机构资助的项目寻找参与者。有了这个定制的功能，#ConnectEP将使癫痫患者能够直接与与慈善机构有关的研究人员接触，以帮助优先考虑资助想法或参与研究。

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.