The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 2,000
- 试验地点
- 5
- 主要终点
- IPF Disease Course
研究概览
简要总结
The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry (PA-IPF) is a cooperative project between five medical centers to coordinate a team of investigators. The aim of this registry will be: 1) To assess the extent of lung fibrosis in the commonwealth of Pennsylvania 2) To provide better access of patients with pulmonary fibrosis in all regions of Pennsylvania to standard of care and diagnosis 3) To facilitate the translation of new therapeutic interventions from the bench to the bedside.
详细描述
The University of Pittsburgh Medical Center, Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease is the coordination center for the Pennsylvania Idiopathic Pulmonary Fibrosis Statewide Research Registry, the collaborative institutions include: the University of Pennsylvania Health System, Geisinger Health System, and Penn State Milton S. Hershey Medical Center.
The PA-IPF Registry developed into a web site that contains information for patients, health professionals, and families, as well as an Internet-based database that will store information about patients to provide them with guidance about care, research, and support groups close to the area in which they live.
Benefits for membership in the PA-IPF Registry include:
- Staying informed about IPF research news, both nationally and locally.
- Having advance notice of any IPF research in which patients may be eligible to participate.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Control
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •IPF diagnosis
- •Sufficient testing results completed for an IPF Diagnosis (screening script)
- •Adults (age > 18 years old)
- •Participants who read and comprehend English language
排除标准
- •Prisoner-patients
结局指标
主要结局
IPF Disease Course
时间窗: 5 years
Monitor IPF disease course
次要结局
未报告次要终点
研究者
Kevin F. Gibson
Professor of Medicine
University of Pittsburgh