ANTIPHOSPHOLIPID SYNDROME COLLABORATIVE REGISTRY

这个子项目是利用由NIH/NCRR资助的中心拨款提供的资源的许多研究子项目之一。子项目和调查员(PI)可能从另一个NIH来源获得了主要资金，因此可能会出现在其他CRISE条目中。列出的机构是针对中心的，而不一定是针对调查员的机构。目的：建立全国抗磷脂综合征(APS)登记系统。该登记处将收集和更新临床、人口学数据，并更新有关APS患者和抗磷脂抗体无症状患者的临床、人口学和实验室数据。研究计划和方法：在这项为期5年的研究中，8个地点每个地点预计每年招收50名患者。参与者将接受约30-45分钟的采访，以了解有关APS的病史和特征的详细信息。将采集并储存血液样本，以确认抗磷脂抗体的存在。一旦参与者被批准注册，就可以就未来涉及注册的研究与他们联系。参与者没有义务参与这些研究。研究进展：这项研究目前有79人在圣安东尼奥网站注册。到目前为止，我们完成了15次为期两年的F/U访问。在全国范围内，登记处只占了一半多一点，已经开始接受供审查的议定书。一旦被接受，这些研究将联系当地网站，并可用于符合条件的患者登记。目的：建立全国抗磷脂综合征(APS)登记系统。该登记处将收集和更新临床、人口学数据，并更新有关APS患者和抗磷脂抗体无症状患者的临床、人口学和实验室数据。研究计划和方法：在这项为期5年的研究中，8个地点每个地点预计每年招收50名患者。参与者将接受约30-45分钟的采访，以了解有关APS的病史和特征的详细信息。将采集并储存血液样本，以确认抗磷脂抗体的存在。一旦参与者被批准注册，就可以就未来涉及注册的研究与他们联系。参与者没有义务参与这些研究。

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. OBJECTIVE: The purpose of this study is to establish a national registry for Antiphospholipid Syndrome (APS). The registry will collect and update clinical, demographic, and update clinical, demographic, and laboratory data on individuals with APS and asymptomatic patients with antiphospholipid antibodies. RESEARCH PLAN AND METHODS: Each of the eight sites are expected to enroll 50 patients per year of the 5-year study. Participants will be interviewed for approximately 30-45 minutes to get detailed information about medical history and features of APS. A blood sample will be obtained and stored for confirmation of the presence of antiphospholipid antibodies. Once the participant has been approved for enrollment they may be contacted about future studies involving the registry. Participants are under no obligation to participate in these studies. STUDY PROGRESS: This study currently has 79 people enrolled at the San Antonio site. We completed 15 two year f/u visits at the present time. Nationally, the registry is just over half full and has begun to accept protocols for review. Once accepted these studies will contact local sites and be available for eligible patient enrollment. OBJECTIVE: The purpose of this study is to establish a national registry for Antiphospholipid Syndrome (APS). The registry will collect and update clinical, demographic, and update clinical, demographic, and laboratory data on individuals with APS and asymptomatic patients with antiphospholipid antibodies. RESEARCH PLAN AND METHODS: Each of the eight sites are expected to enroll 50 patients per year of the 5-year study. Participants will be interviewed for approximately 30-45 minutes to get detailed information about medical history and features of APS. A blood sample will be obtained and stored for confirmation of the presence of antiphospholipid antibodies. Once the participant has been approved for enrollment they may be contacted about future studies involving the registry. Participants are under no obligation to participate in these studies.