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

我们将为癫痫患者开发一款手机应用程序。该应用程序将使癫痫患者能够最好地管理他们在家庭环境中的状况，同时通过自愿参与癫痫研究来促进他们的使命感。为了应对新冠肺炎危机，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。我们的调查揭示了人们对隔离对压力、心理健康和焦虑、记忆和睡眠的影响的担忧，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。获得相关信息并为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，以减少因新冠肺炎而导致的隔离的影响。#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。它将是传递最新信息、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能力的重要资源。针对新冠肺炎提出的社区调查提出的与世隔绝的挑战，我们立即将重点放在压力和精神健康、药物依赖、睡眠和癫痫发生上。在项目的初始阶段，我们已经与许多慈善机构和组织建立了联系，这些机构和组织有兴趣开发数据驱动的项目，但未能围绕这些建立可持续的商业模式。延长Impact资金将使我们能够探索并正式确定与其任务与#ConnectEP应用程序协同的合作伙伴的这些关系。例如，在该项目的初始阶段，我们与英国一家领先的研究慈善机构建立了合作伙伴关系。#ConnectEP将在该应用程序的用户基础和研究人员之间提供直接联系，这些研究人员要么正在寻求慈善机构的资金，要么正在为慈善机构资助的项目寻找参与者。有了这一定制功能，#ConnectEP将使癫痫患者能够直接与与该慈善机构有关的研究人员接触，以帮助确定资助的优先顺序或参与研究。

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.