A Population-based Ankylosing Spondylitis [PAS] cohort

由于所涉及的时间范围和难以计算相关的非医疗费用（如残疾或因病缺乏收入），研究长期条件可能很困难。已经定期收集了所有使用NHS的人的大量信息。然而，这些信息保存在许多不同的NHS系统中，例如全科医生、他们的专家、医院和实验室。通过将这些信息联系起来，可以通过卫生系统跟踪患有特定疾病的人。此外，这些人还可以通过填写有关其疾病影响（如功能或疼痛）的问卷，直接为收集的数据做出贡献。这些信息可以反馈给他们通常的医生，从而有助于他们的个人护理，同时也提高了所收集数据的质量和价值。在这项研究中，我们打算应用这些策略，将生活在威尔士的人们与强直性脊柱炎（第二常见的炎症性关节炎）相关的数据联系起来。这些数据将以安全和匿名的方式收集和分析，以帮助解决有关这种情况的重要研究问题。例如，这些链接的信息将帮助我们更好地了解这种终身状况的变化；帮助在疾病早期预测哪些患者将发展为最致残的疾病，需要更积极的治疗；促进对该病真实成本的估计，从而在新疗法问世时加快对昂贵疗法的评估；并帮助更好地规划这些患者通过卫生系统的途径。这项研究将促进强直性脊柱炎的遗传和生物学研究，以及新药物的试验，从而进一步提高对这种疾病的了解，并吸引高质量的研究到NHS。这里使用的方法建立在英国现有资源的基础上，也可以应用于未来的许多其他情况。

Studying long term conditions can be difficult as a result of the timescale involved and the difficulty in capturing associated non-medical costs such as disability or lack of earnings due to illness. A great deal of information is already regularly collected on all people using the NHS. However, this information is held in many different NHS systems, such as with the general practitioner, their specialist, the hospital and laboratories. By linking this information, people with specific conditions can be followed through the health system. In addition, these people can also contribute directly to the data collected by completing questionnaires about the effects of their disease, such as function or pain. This information can be fed back to their usual doctor, thereby contributing to their personal care, while also improving the quality and value of the data collected. In this study we intend to apply these strategies of linking data relating to people living in Wales with ankylosing spondylitis, the second most common inflammatory arthritis. This data will be collected and analysed in a secure and anonymised manner to help address important research questions about this condition. For example, this linked information will help us to better understand the variations in this lifelong condition; help to predict early in the disease which patients will develop the most disabling disease requiring more aggressive therapy; facilitate estimates of the true cost of this condition, thereby speeding up assessments of expensive new treatments as they become available; and help to better plan the pathway of these patients through the health system. This study will facilitate genetic and biological studies, as well as trials of new medications for ankylosing spondylitis, thereby further improving understanding of this condition and attracting high quality research to the NHS. The methods used here build on existing resources in the UK and can also be applied to many other conditions in the future.