Unlock PsA: Stratifying the Impact of Psoriatic Arthritis in Children and Adults

该项目的目标：发现有不同治疗需求的牛皮癣关节炎(PSA)患者群体。背景：PSA的缓解率很低，许多人在确诊数年后仍有症状。早期PSA的治疗往往是以相同的顺序进行的，即使不同的人的疾病看起来不同，大多数情况下第一种“疾病修正药物”是甲氨蝶呤。可能有一群人有相同的问题组合，他们的生活受到PSA类似方式的影响。这些群体可能需要不同的治疗，比如开始使用不同的药物或更早的物理治疗。由于PSA如此多样和复杂，这些群体对医生来说可能并不明显，只能使用人工智能中的新方法才能找到。这个项目将使用这些方法来计算出有多少组PSA，每个组中的人有什么经历，并创建一个工具，在他们的疾病旅程开始时找出他们属于哪个组。这将有助于从不同的医疗保健领域挑选最好的治疗方法，并了解如果人们的PSA从童年或成年开始，治疗方法是否应该相同。方法和方法：来自欧洲和加拿大的6项研究将纳入新诊断为PSA的儿童和成人。这些研究收集了随着时间的推移诊断出的PSA的个人特征、疾病及其对日常生活的影响的信息。人工智能中的新方法将找到一组在诊断时和开始使用甲氨蝶呤后一年分享PSA影响的人。这将有助于在早期确定哪些群体可能需要从不同的医疗保健领域进行不同的治疗。然后，该项目将寻找在儿童期和成年期开始患病的人之间共享的PSA组。这可能会导致对那些从童年开始患病的人进行更广泛的治疗，并缩短不同年龄段的正确治疗的时间。患者参与研究的设计和实施：患者伴侣的参与来自儿童、年轻人和家长群体(您的Rheum、集群冠军、SNAC、CCAA)以及患有PSA的成年人(研究用户组，BritPACT)。一个优先研究领域是找出哪些PSA患者在确诊后应该立即接受不同的治疗。这些小组随后帮助计划了这一项目的进展，应结合这些经验进行研究，并将对甲氨蝶呤的反应作为关键项目目标，以及比较儿童和成年PSA的重要性。通过该项目计划了五个参与重点小组，以找出分享调查结果的最佳方式(重点小组1和5)、开发统计模型(重点小组2、3和4)、解释结果(重点小组2、3和4)、提供反馈和庆祝参与(讲习班5)。PSA患者的预期收益：由不同类型的PSA驱动的治疗选择。对人们的疾病将如何发展更具确定性，对为他们选择的治疗方法也更有信心。一种新的工具将预测甲氨蝶呤对PSA的物理特征以及疼痛、生活质量和其他症状的效果如何。将受益于甲氨蝶呤的人可以更早地获得这种药物，而那些疾病只在某些地区有反应的人，或者在服用甲氨蝶呤后生活质量没有改善的人，可以在更早的阶段获得其他治疗选择，如不同的抗风湿药物、物理治疗、职业治疗或心理治疗，以防止疾病的影响。这将缩短缓解时间，减轻疾病负担，并降低不必要药物的副作用。最后，如果这个项目发现PSA无论是从童年还是成年开始，都有相同的模式，那么患有PSA的儿童和年轻人可以得到更广泛的治疗。

Aim of the project: to uncover groups of people with psoriatic arthritis (PsA) who have different treatment needs. Background: Remission rates in PsA are low with many people still having symptoms years after they are diagnosed. Treatments for early PsA tend to be given in the same order even if peoples' diseases look different, with the first 'disease-modifying drug' being methotrexate in most cases. There might be groups of people who have the same combinations of problems and whose lives are impacted in the similar ways by PsA. These groups may need different treatments like starting with a different drug or earlier physiotherapy. Because PsA is so varied and complicated, the groups may not be obvious to doctors and can only be found using new methods in artificial intelligence. This project will use these methods to figure out how many groups of PsA there are, what experiences people in each group have, and create a tool to figure out which group they belong to right at the start of their disease journey. This will help pick the best treatments from different areas of healthcare and understand if treatments should be the same if people's PsA started in childhood or adulthood. Methods and approach: Children and adults with newly-diagnosed PsA will be included from six studies across Europe and Canada. The studies collect information from a diagnosis of PsA over time on personal characteristics, disease, and its impact on everyday life. New methods in artificial intelligence will find groups of people who share PsA impacts at diagnosis and in the year after starting methotrexate. This will help pinpoint which groups might need to have different treatments from different areas of healthcare early on. The project will then look for groups of PsA that are shared between people whose disease started in childhood versus adulthood. This could lead to a greater range of treatments for people whose disease started in childhood and shorter times to the right treatment across ages. Patient involvement in the design and conduct of the study: Patient partner involvement comes from children, young persons and parent groups (Your Rheum, CLUSTER champions, SNAC, CCAA) and from adults with PsA (Research User Group, BritPACT). A priority research area was to figure out which groups of people with PsA should have different treatments right after they are diagnosed. These groups have then helped plan this project moving forward, with which experiences should be studied, adding response to methotrexate as a key project aim, and the importance of comparing PsA in childhood versus adulthood. There are five involvement focus groups planned through the project, to figure out the best way to share the findings (focus groups 1 & 5), develop the statistical models (focus groups 2, 3 & 4), interpret the results (focus groups 2, 3 & 4), give feedback and celebrate involvement (workshop 5). Expected benefits for people with PsA: Treatment choices driven by different types of PsA. More certainty about how people's disease will progress and more confidence in the treatments picked for them. A new tool will predict how well methotrexate will work for PsA physical features alongside pain, quality of life and other symptoms. People who would benefit from methotrexate could be offered this drug earlier, and those whose disease only responds in certain areas, or whose quality of life does not improve after taking methotrexate could be given other treatment options at an earlier stage such as different anti-rheumatic drugs, physiotherapy, occupational therapy or psychology to prevent the impacts of disease. This would shorten the time to remission and decrease the burden of disease, as well as lower side-effects from unnecessary medications. Finally, children and young people with PsA could be offered a greater range of treatments if this project finds PsA has the same patterns whether it starts in childhood or adulthood.