PROSPECTIVE LUPUS COHORT STUDY OF DISEASE ACTIVITY AND PREDICTORS OF MORBIDITY

本子项目是利用由NIH/NCRR资助的中心赠款提供的资源的众多研究子项目之一。子项目和研究者（PI）可能已经从另一个NIH来源获得了主要资金，因此可以在其他CRISP条目中表示。列出的机构是中心的，不一定是研究者的机构。JHH狼疮中心具有独特的地理位置，通过对大量SLE患者的前瞻性随访来解决临床研究问题。在Petri博士获得FIRST奖期间，研究涉及的问题包括与抗磷脂抗体相关的未来血栓形成和冠状动脉疾病的风险、常规心血管危险因素和泼尼松的使用。狼疮研究小组现在已经得到了NIH的退款。RO-1的具体目标虽然是FIRST奖励工作的延续，但现在包括强调疾病活动和残疾。持续的疾病活动使患者暴露于皮质类固醇的副作用。超过一半的患者会遭受永久性器官损伤。确定疾病活动的预测因素应有助于减少不必要的皮质类固醇治疗，并允许在需要时进行早期治疗。每当病人预约就诊时，就会额外抽取三到十汤匙的血液来检测疾病活动和凝血情况。柔软肌肉（纤维肌痛）的记录也已完成。此外，每年还会与患者联系几次，以便我们确定器官损伤和残疾的其他危险因素（通过使用问卷）。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. The Lupus Center at JHH is uniquely situated to address clinical research issues through prospective follow-up of a large number of SLE patients. During Dr. Petri's FIRST award, issues addressed included the risk of future thrombosis and coronary artery disease associated with antiphospholipid antibodies, routine cardiovascular risk factors, and prednisone use. The Lupus Cohort has now been refunded by the NIH. The specific aims of the RO-1, although a continuation of the FIRST award work, now include an emphasis on disease activity and disability. Ongoing disease activity exposes patients to the side effects of corticosteroids. Over one-half of patients sustain permanent organ damage. Determination of predictors of disease activity should help to reduce unneeded corticosteroid treatment and allow institution of earlier treatment when it is needed. Whenever a patient has a scheduled visit, three to ten extra tablespoons of blood are drawn to test for disease activity and clotting. A record of tender muscles (fibromyalgia) is also completed. In addition, several times a year, patients are contacted so that we can determine other risk factors for organ damage and disability (through the use of questionnaires).