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

• 批准号: 60469
• 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

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状况，同时通过自愿性癫痫研究参与为目标感做出贡献。为了应对19日危机，我们对癫痫患者进行了全球调查。在4月7日至14日之间，我们收到了150多个回复，其中包括近100个来自英国的回复。我们的调查揭示了对隔离对压力，心理健康和焦虑，记忆和睡眠的影响的担忧，对药物依从性和癫痫发作的影响产生了影响。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，这是癫痫患者的重要优先事项。被相关信息赋予能力，并为自己的状况管理做出贡献，并为了解癫痫病的更广泛的研究工作而被认为对减少COVID-19引起的隔离影响非常重要。它将是提供最新信息，记录相关信息，最新研究结果以及为研究和临床研究做出贡献的重要资源。为了应对我们社区调查提出的Covid-19提出的隔离挑战，我们的直接重点将放在压力和心理健康，毒品依从性，睡眠和癫痫发作上。在项目的初始阶段，我们已经与许多对开发数据驱动的项目感兴趣的慈善机构和组织相关，但他们无法开发围绕这些维持业务模型。影响资金的扩展将使我们能够与与#Connectep应用程序协同的合作伙伴一起探索和建立这些关系。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金或寻求慈善机构资助项目的参与者的研究人员之间提供直接联系。凭借这种定制功能，#Connectep将使癫痫患者能够直接与与慈善机构联系的研究人员互动，以帮助优先考虑资金的想法或参与研究。