多发性硬化康复研究项目
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Overview | Research Projects | Training Programs | Team | Contact
Overview
我们的研究计划侧重于寻求理解和优化日常功能的项目, quality of life and health equity for individuals with multiple sclerosis (MS) and related conditions, as well as their families, 照顾者和支持网络. 我们的项目包括认知功能的研究.g.(思维，记忆)，情感功能(e.g.例如，情绪和压力)，健康行为(如.g.自我管理睡眠、疲劳、体力活动)和健康的社会决定因素(e.g.影响MS患者生活质量的因素(如医疗保健获取、社会经济地位、就业). Our work may also include individuals with other inflammatory conditions that affect the central nervous system, 包括:临床孤立综合征(CIS), neuromyelitis optica (NMO), 横贯脊髓炎(TM)和僵硬人综合征(SPS).
我们的团队特别致力于以下研究:
- Enhances accessibility of assessments and interventions for individuals with MS and related conditions
- Seeks to understand the interaction of an individuals' experience with MS in the context of their social systems (e.g.(家庭、工作、人际关系)
- Engages historically underserved and underrepresented people in the MS community and other disability communities
我们与合作伙伴密切合作 约翰霍普金斯多发性硬化症中心 and the 约翰霍普金斯健康公平中心.
Research Projects
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Principal Investigator: Jagriti " Jackie " Bhattarai博士.D.
Funding sources: This research study is supported by funding from the Hopkins Center for Health Disparities Solutions (HCHDS), the National Institute on Minority Health and Health Disparities (NIMHD) and the 美国国立卫生研究院.
Grant No.: U54MD000214
Study No.: IRB00193860Study information: This research aims to help understand how health literacy and quality of patient-provider communication impact patient engagement in health care in African-Americans/blacks and Caucasians/whites with multiple sclerosis (MS). 采用混合方法研究设计，我们计划实现以下目标:
- 确定邻里和种族的主要影响, and their interaction, 非裔美国人/黑人和高加索人/白人多发性硬化症患者的健康素养.
- 确定邻里和种族的主要影响, and their interaction, on patient-provider communication among African-Americans/blacks and Caucasians/whites with MS.
- Determine the degree to which health literacy and patient-provider communication mediate the relationships between neighborhood and race and patient engagement in medical care.
We expect the results of this pilot study to inform future grant proposals focusing on the development of empirically supported interventions to enhance patient engagement through greater health literacy and improved patient-provider communication among individuals with MS.
招聘及参与信息本研究将招募非裔美国人/黑人和高加索人/白人多发性硬化症患者. Participation involves completion of an online battery of quantitative assessments on patient engagement in health care, 医患沟通和卫生素养. A subset of participants from the overall sample will also attend a one-hour qualitative in-depth, in-person interview. Those who complete the online battery of quantitative assessments will receive $15 and those who complete the in-person interview will receive a $50 incentive. 官方全球十大外围足球平台将于2019年春季公布.
有关研究的更多信息，请联系 [email protected].
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Principal Investigator: Meghan Beier, Ph.D.
Funding source:国家多发性硬化症协会
Grant # PP-1609-25972
Study information: Neurocognitive dysfunction affects more than 50 percent of individuals with multiple sclerosis (MS) and contributes to substantial decrements in quality of life. Traditional in-person cognitive batteries are validated for assessing 神经心理障碍. However, reliance on in-person assessment creates barriers for both clinical patients and research participants, 尤其是那些身体活动受限的人, access to transportation, 和/或地理位置接近专业提供者和诊所. 多脑计划(MBP), a validated, open-source, 基于网络的评估组, 提供一种替代方案，消除了面对面评估的障碍. This pilot study seeks to investigate the discriminant validity and reliability of the Many Brains Project (MBP) assessment against traditional test batteries recommended for individuals with MS
招聘及参与信息: 这项研究旨在招募多发性硬化症患者和健康对照者. 招聘将于2017年8月开始. Participation involves one in-person appointment where participants will complete a battery of traditional and web-based cognitive tests, 以及一系列的生活质量调查问卷. Enrolled participants will also be asked to complete the web-based cognitive assessment a second time, at home, 当面评估后三周.
有关研究的更多信息，请联系: [email protected]
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Principal Investigator: Abbey Hughes, Ph.D.
Funding Source:国家医学康复研究中心, 尤尼斯·肯尼迪·施莱弗国家儿童健康和人类发展研究所, 美国国立卫生研究院
Study Information本研究的目的是开发一种创新的, effective and accessible intervention for treating sleep disturbance in individuals with multiple sclerosis (MS). Sleep disturbance is a significant health problem affecting an astounding 54–67 percent of people with MS. 睡眠障碍是造成疲劳的主要原因之一, 神经心理障碍, pain, 抑郁症和MS患者生活质量下降. Although research supports cognitive behavioral therapy for insomnia (CBT-I) as the gold standard treatment for sleep disturbance, 它还需要在MS中进行调整和测试. Thus, the objective of this five-year research project is to develop and evaluate the preliminary effects of an innovative, 网络认知行为干预治疗多发性硬化症患者的睡眠障碍.
招聘及参与信息: This study will recruit individuals with MS who report clinically significant insomnia (difficulty initiating and maintaining sleep). Participants will complete a series of online and phone-based assessments and will participate in an online self-guided program to learn strategies for improving sleep. 这种干预措施目前正在开发中. 官方全球十大外围足球平台将于2017年秋季公布.
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与…密切合作 约翰霍普金斯神经内科多发性硬化症中心，我们亦参与下列研究和措施:
鼻内胰岛素改善多发性硬化症患者的认知功能
Principal Investigators: Ellen Mowry, M.D., and Scott Newsome, D.O.
Primary objective: to evaluate the safety and tolerability of intranasal insulin in people with multiple sclerosis.
Secondary objective评估鼻内胰岛素是否能改善多发性硬化症患者的记忆和学习, 经过各种神经心理学测试. This research is being done because cognitive impairment is common in and devastating to people with MS. 多发性硬化症相关的认知障碍与生活质量下降有关, loss of employment, 社会关系受损, compromised driving safety, 减少了对治疗的坚持. Insulin is critical with helping to control brain function and metabolism and has been shown to improve memory and learning in subjects with neurological diseases.MS PATHS: MS合作伙伴推进技术和健康解决方案
现场首席调查员: Ellen Mowry, M.D.
Training Programs
The MSRP is also committed to training graduate students and postdoctoral fellows in rehabilitation and MS-related research. 我们目前的培训项目:
