Department of Rheumatology, St Albans City Hospital, Waverley Road, St Albans AL3 5PN, UK.
Rheumatology (Oxford). 2011 Jan;50(1):176-83. doi: 10.1093/rheumatology/keq318. Epub 2010 Oct 7.
To evaluate the strengths and weaknesses of a register of management and outcomes of recently diagnosed RA, and allow comparisons between rheumatology centres on good clinical practice and guidelines.
A register of newly diagnosed RA was initiated in 1986 in nine different regions of England, later expanded to UK-wide membership in 2002. Standardized data collection includes disease activity, function, radiological damage, therapy, hospitalizations, major comorbidity and mortality. A centralized database generates individual reports and comparative data for each centre yearly. Aims have been compared with actual achievements and any changes over 25 years.
Thirty rheumatology centres have recruited 2866 patients. Study outputs have included peer-reviewed scientific publications and contributions to the recent National Audit Office report on RA. Referral times into secondary care have changed little over 25 years, but time to initiation of drug therapies has decreased. Delays between publication of clinical trial evidence and management guidelines and their implementation in normal clinical practice are illustrated by relatively infrequent use of combination therapies at diagnosis. Consecutive case recruitment, centre participation and follow-up were reportedly compromised by local funding issues. Centre participants report a benefit from feedback of actual clinical practice compared with recommended standards of care.
Most of the original objectives have been achieved. Cohort studies based predominantly in District General Hospitals provide unique insights into the natural history and impact of RA, its management, the translation of research findings into clinical practice and provide participating centres with important clinical governance and professional development opportunities.
评估最近诊断出的类风湿关节炎管理和结局登记册的优缺点，并允许对风湿病中心的良好临床实践和指南进行比较。
1986 年在英格兰的九个不同地区启动了一个新诊断的类风湿关节炎登记册，后来在 2002 年扩展到全英范围的会员资格。标准化的数据收集包括疾病活动度、功能、放射学损伤、治疗、住院、主要合并症和死亡率。一个集中的数据库每年为每个中心生成个人报告和比较数据。目标已与实际成果和 25 年来的任何变化进行了比较。
30 个风湿病中心共招募了 2866 名患者。研究结果包括同行评议的科学出版物和对最近国家审计署关于类风湿关节炎报告的贡献。进入二级保健的转诊时间在 25 年中变化不大，但开始药物治疗的时间已经减少。临床试验证据和管理指南的出版与在常规临床实践中的实施之间的延迟，说明了在诊断时联合治疗的使用相对较少。连续病例招募、中心参与和随访据称因当地资金问题而受到影响。中心参与者报告说，与推荐的护理标准相比，实际临床实践的反馈对他们有好处。
大多数最初的目标已经实现。主要在地区综合医院进行的队列研究为类风湿关节炎的自然史和影响、管理、研究结果转化为临床实践以及为参与中心提供重要的临床治理和专业发展机会提供了独特的见解。
