ANTIPHOSPHOLIPID SYNDROME COLLABORATIVE REGISTRY

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。目的：本研究的目的是建立抗磷脂综合征（APS）的国家登记。该登记处将收集和更新APS患者和无症状抗磷脂抗体患者的临床、人口统计学数据，并更新临床、人口统计学和实验室数据。研究计划和方法：在为期5年的研究中，8个研究中心中每个中心预计每年招募50名患者。参与者将接受约30-45分钟的访谈，以获得有关APS病史和特征的详细信息。将采集并保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，他们可能会被联系有关未来的研究涉及登记处。参与者没有义务参加这些研究。研究进展：这项研究目前有79人在圣安东尼奥站点注册。目前，我们完成了15次为期两年的f/u访问。在全国范围内，该登记处刚刚满了一半，并已开始接受审查协议。一旦被接受，这些研究将联系当地站点，并为符合条件的患者登记。目的：本研究的目的是建立抗磷脂综合征（APS）的国家登记。该登记处将收集和更新APS患者和无症状抗磷脂抗体患者的临床、人口统计学数据，并更新临床、人口统计学和实验室数据。研究计划和方法：在为期5年的研究中，8个研究中心中每个中心预计每年招募50名患者。参与者将接受约30-45分钟的访谈，以获得有关APS病史和特征的详细信息。将采集并保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，他们可能会被联系有关未来的研究涉及登记处。参与者没有义务参加这些研究。

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.