MICA ADVANTAGE visceral pain consortium: Advanced Discovery of Visceral Analgesics via Neuroimmune Targets and the Genetics of Extreme human phenotype

ADVANTAGE联盟旨在改善我们治疗内脏疾病患者的方式，如子宫内膜异位症、结肠炎和肾病，重点关注他们的疼痛，而不仅仅是他们的潜在疾病。在英国，每20个人中就有1人因内脏疼痛而残疾——大约相当于整个威尔士的人口数。这种情况对患者来说是一种可怕的负担：不仅在他们生活中最亲密的时刻引起疼痛，而且经常引发不可预测的疼痛“发作”，可能需要住院治疗。因此，令人惊讶和失望的是，我们对内脏疼痛知之甚少；没有人系统地研究过疼痛与潜在的内脏疾病之间的关系，它与其他健康问题之间的关系，以及它如何影响人们的心理健康。我们的联盟将建立一个全英国范围的内脏疼痛患者数据库来解决这些问题。我们还将研究那些连接内部器官和大脑最终引起疼痛的神经，因为它们的确切身份尚不清楚。收集的数据库和生物学知识将使我们能够：1)回答为什么患有相同内脏疾病的人会有完全不同的疼痛经历，包括耀斑；2)开始寻找专门为内脏疼痛设计的止痛药和疗法，尽管目前迫切需要这些药物。我们的工作将分为不同的工作组，每个工作组由国际公认的专家临床医生或科学家领导。从开始到结束，所有的研究都将由患者和患者支持组织的投入来丰富。我们的内脏疼痛数据库将收录来自膀胱、肠道、肺、肾脏、胰腺、子宫、阴道和骨盆的疼痛患者。它将建立在现有的医院和全科医生记录的基础上，并将是面向未来的，旨在培养和召回志愿者进行额外的研究。我们还将与英国各地正在建立的类似疼痛联盟密切合作。我们将特别关注处于极端情况的人：那些尽管有明显疾病但几乎没有疼痛的人，以及那些尽管几乎没有疾病迹象但疼痛严重的人。我们将使用标准的自我报告方法记录他们的痛苦，但也会探索其他方法来捕捉他们的经历；例如，使用自动传感器记录一整天的活动和生理变化。为了找出导致某些人剧烈疼痛的原因，我们将研究参与者的遗传和免疫系统。我们还将研究男女之间的差异，为什么某些疾病主要影响女性，以及女性在某些研究领域的代表性不足，以确保任何新的治疗方法对每个人都有平等的好处。我们的最终目标是从患者的角度提高我们对内脏疼痛的理解，这样NHS就可以开发并为患者提供更有效的干预和支持，以解决他们症状的多样性，并帮助提高他们的生活质量。

The ADVANTAGE consortium aims to improve how we treat people with visceral diseases, such as endometriosis, colitis and kidney disease, focusing on their pain rather than just their underlying disease. One in twenty individuals in the UK are disabled by visceral pain - approximately as many people as live in the entire country of Wales. The condition is a terrible burden for those who suffer from it: causing pain not only during the most intimate moments of their lives, but also frequently triggering unpredictable episodes of pain "flares" that can need hospital admission. It is therefore surprising and disappointing how little we know about visceral pain; no one has systematically studied how the pain connects to the underlying visceral disease, how it relates to other health problems, and how it affects people's psychological wellbeing. Our consortium will set up a UK-wide database of visceral pain patients to address these questions. We will also study those nerves connecting inner organs to the brain to ultimately cause pain, as their exact identity is unknown. The database and biological knowledge collected will enable us to:1) answer why people with the same visceral disease can have completely different pain experiences, including flares; 2) start looking for painkillers and therapies specifically designed for visceral pain, which although they are desperately needed do not currently exist.Our work will be divided into various taskforces, each led by an internationally recognised expert clinician or scientist. All research will be enriched by input from patient and patient support organisations from start to finish. Our visceral pain database will enrol individuals with pain originating from the bladder, gut, lung, kidney, pancreas, uterus and vagina, and in the pelvis. It will be built on existing hospital and GP records and will be future-proof, set up to grow and recall volunteers for additional studies. We will also work closely with similar pain consortia being set up across the UK. We will look especially for people at the extremes: those with little pain despite clear disease, and those with severe pain despite few signs of disease. We will record their pain using standard self-report methods, but also explore other ways to capture their experience; for example, using automatic sensors to record activity and physiological changes throughout the day. To find out what causes severe pain in some people, we will study the genetic and immune systems of participants. We will also examine differences between men and women, why certain conditions predominantly affect women, and the under-representation of women in some research areas, to make sure that any new treatments benefit everyone equally. Our ultimate aim is to improve our understanding of visceral pain from the perspective of people living with the condition, so that the NHS can develop and offer patients more effective interventions and support to address the diverse nature of their symptoms and help improve their quality of life.