Principal Investigator: Jagriti “Jackie” Bhattarai, Ph.D.

Funding sources本研究由霍普金斯健康差异解决方案中心(HCHDS)资助。, 国家少数民族健康和健康差异研究所(NIMHD)和国家卫生研究院(NIH).

Grant No.: U54MD000214
Study No.: IRB00193860

Study information本研究旨在帮助了解健康素养和医患沟通质量如何影响患有多发性硬化症(MS)的非裔美国人/黑人和高加索人/白人的患者参与医疗保健。. Using a mixed-method research design, we plan to achieve the following goals:

• Determine the main effects of neighborhood and race, and their interaction, on health literacy in African-Americans/blacks and Caucasians/whites with MS.
• Determine the main effect of neighborhood and race, and their interaction, 非裔美国人/黑人和白种人/白人多发性硬化症患者与医疗服务提供者之间的沟通.
• 确定健康素养和医患沟通在多大程度上调解邻里、种族和患者参与医疗护理之间的关系.

我们希望这项试点研究的结果能够为未来的拨款提案提供信息，重点关注发展经验支持的干预措施，通过提高健康素养和改善MS患者与提供者之间的沟通来提高患者参与度.

Recruitment and participation information: This study will recruit African-American/black and Caucasian/white individuals with MS. 参与包括完成一系列关于患者参与卫生保健的在线定量评估, patient-provider communication and health literacy. 总体样本中的一部分参与者也将参加一个小时的定性深入, in-person interview. 完成一系列在线定量评估的人将获得15美元，完成面对面面试的人将获得50美元的奖励. Official recruitment information will be announced in spring 2019.

For more information about the study, please contact [email protected].

Principal Investigator: Meghan Beier, Ph.D.

Funding source: National Multiple Sclerosis Society

Grant # PP-1609-25972

Study information神经认知功能障碍影响超过50%的多发性硬化症(MS)患者，并导致生活质量大幅下降. 传统的面对面认知电池在评估神经心理功能障碍方面得到了验证. However, 对面对面评估的依赖对临床患者和研究参与者都造成了障碍, especially individuals who are limited in their physical mobility, access to transportation, and/or geographical proximity to specialty providers and clinics. The Many Brains Project (MBP), a validated, open-source, web-based assessment battery, offers an alternative that eliminates the barriers of in-person assessments. 本初步研究旨在调查多脑计划(MBP)评估与推荐给多发性硬化症患者的传统测试电池的区别效度和可靠性

Recruitment and participation information: This study seeks to enroll both individuals with multiple sclerosis and healthy controls. Recruitment will begin in August 2017. 参与包括一次面对面的预约，参与者将完成一系列传统和基于网络的认知测试, as well as a series of quality of life questionnaires. 入选的参与者还将被要求第二次完成基于网络的认知评估, at home, three weeks after the in-person assessment.

For more information about the study, please contact: [email protected]

Principal Investigator: Abbey Hughes, Ph.D.

Funding Source: National Center for Medical Rehabilitation Research (NCMRR), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH)

Study Information: The goal of this study is to develop an innovative, 治疗多发性硬化症(MS)患者睡眠障碍的有效和可及的干预措施. 睡眠障碍是严重的健康问题，影响了惊人的54 - 67%的多发性硬化症患者. Sleep disturbance is one the primary contributors to fatigue, neuropsychological dysfunction, pain, depression and diminished quality of life in MS. 尽管研究支持失眠的认知行为疗法(CBT-I)作为治疗睡眠障碍的金标准, it has yet to be adapted and tested in MS. Thus, 这个为期五年的研究项目的目标是开发和评估一种创新的初步效果, internet-delivered cognitive behavioral intervention for sleep disturbance in MS.

Recruitment and Participation Information: 本研究将招募报告临床显著失眠(难以开始和维持睡眠)的MS患者。. 参与者将完成一系列在线和电话评估，并参加一个在线自我指导项目，学习改善睡眠的策略. This intervention is currently under development. Official recruitment information will be announced in fall 2017.

In close collaboration with the Johns Hopkins Department of Neurology Multiple Sclerosis Center, we are also involved in the following studies and initiatives:

Intranasal Insulin for Improving Cognitive Function in Multiple Sclerosis
Principal Investigators: Ellen Mowry, M.D., and Scott Newsome, D.O.
Primary objective: 评估多发性硬化症患者鼻内胰岛素的安全性和耐受性.
Secondary objective: to evaluate if intranasal insulin improves memory and learning in people with MS, as assessed by various neuropsychological tests. 之所以进行这项研究，是因为认知障碍在多发性硬化症患者中很常见，而且对他们来说是毁灭性的. MS-related cognitive impairment is associated with lowered quality of life, loss of employment, impaired social relationships, compromised driving safety, and reduced adherence to treatment. 胰岛素在帮助控制大脑功能和新陈代谢方面至关重要，并已被证明可以改善神经系统疾病患者的记忆和学习能力.

MS PATHS: MS Partners Advancing Technology and Health Solutions
Site Principal Investigator: Ellen Mowry, M.D.

Johns Hopkins Precision Medicine Center of Excellence for Multiple Sclerosis