Collaboration on Neuroimmunology: Question, Understand, Educate, Restore - The Longitudinal CONQUER Study of Rare Neuroimmunologic Disorders
试验速览
- 阶段
- 不适用
- 状态
- 进行中（未招募）
- 入组人数
- 150
- 试验地点
- 1
- 主要终点
- Measure change in standard clinical assessments over time
研究概览
简要总结
This study seeks to determine the biologic causes of inflammation in patients with Transverse Myelitis (TM) Neuromyelitis Optica Spectrum Disorder (NMOSD) and related conditions. While patients will be treated according to decisions with their treating physician, this study will collect data and samples from patients prospectively to gain a better understanding of the disease. We are seeking to understand why some patients respond to medications, while others do not. We also seek to understand what happens biologically, preceding relapses. Gathering these data and samples will allow researchers to identify new ways of diagnosing and treating these diseases. Data and samples will be shared with researchers around the world to support collaborative efforts to treat these conditions.
详细描述
This study seeks to determine the biologic causes of inflammation in patients with Neuromyelitis Optica (NMO), Transverse Myelitis (TM), optic neuritis (ON), related conditions and healthy controls. While patients will be treated according to decisions with their treating physician, this study will collect data and samples from patients prospectively to gain a better understanding of the disease. We are seeking to understand why some patients respond to medications, while others do not. We also seek to understand what happens biologically, preceding relapses. Gathering these data and samples will allow researchers to identify new ways of diagnosing and treating these diseases. Data and samples will be shared with researchers around the world to support collaborative efforts to treat these conditions.
Patients will agree to share medical records, complete questionnaires and donate samples on a timed basis.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 6 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Age 6 years or greater
- •Male or Female
- •Patient or Parent (in the case of a minor) able to give informed consent
- •For patients 10 to 17, patient able to assent
- •Patient diagnosed with NMO, NMOSD, TM or ON
排除标准
- •Unable to maintain scheduled visits
- •Patient has known HIV or hepatitis C infection
结局指标
主要结局
Measure change in standard clinical assessments over time
时间窗: Every study visit
Standard clinical assessments include: relapse information, level of disability based on EDSS score, high and low contract visual acuity, ambulation index, optical coherence tomography, and MRI, and neurologic/physical exam
次要结局
- Measure change in cognition measures over time(Every study visit)
- Measure change in self-reported quality of life surveys(Every study visit)
- B cell population changes(Up to 5 years)
研究者
Benjamin Greenberg
Director, Neuromyelitis Optica and Transverse Myelitis Program
University of Texas Southwestern Medical Center