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Place, Race and the Health Care System: A Pathway Toward Patient Engagement in Multiple Sclerosis
Principal Investigator: Jagriti “Jackie” Bhattarai, Ph.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 National Institutes of Health (NIH).
Grant No.: U54MD000214
Study No.: IRB00193860
Study 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). 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, 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.
Recruitment and participation information: This study will recruit African-American/black and Caucasian/white individuals with MS. Participation involves completion of an online battery of quantitative assessments on patient engagement in health care, patient-provider communication and health literacy. 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. Official recruitment information will be announced in spring 2019.
For more information about the study, please contact firstname.lastname@example.org.
200 to 2,000: Expanding the Scope of Multiple Sclerosis Cognitive Research by Establishing the Reliability of a Web-based Cognitive Assessment
Principal Investigator: Meghan Beier, Ph.D.
Funding source: National Multiple Sclerosis Society
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 neuropsychological dysfunction. However, reliance on in-person assessment creates barriers for both clinical patients and research participants, 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. 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
Recruitment and participation information: This study seeks to enroll both individuals with multiple sclerosis and healthy controls. Recruitment will begin in August 2017. Participation involves one in-person appointment where participants will complete a battery of traditional and web-based cognitive tests, as well as a series of quality of life questionnaires. Enrolled participants will also be asked to complete the web-based cognitive assessment a second time, at home, three weeks after the in-person assessment.
For more information about the study, please contact: MSCogWeb@jhu.edu
An Internet-delivered Cognitive Behavioral Intervention for Sleep Disturbance in Multiple Sclerosis (MS)
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, 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. Sleep disturbance is one the primary contributors to fatigue, neuropsychological dysfunction, pain, depression and diminished quality of life in MS. Although research supports cognitive behavioral therapy for insomnia (CBT-I) as the gold standard treatment for sleep disturbance, it has yet to be adapted and tested in MS. Thus, the objective of this five-year research project is to develop and evaluate the preliminary effects of an innovative, internet-delivered cognitive behavioral intervention for sleep disturbance in MS.
Recruitment and Participation Information: 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. This intervention is currently under development. Official recruitment information will be announced in fall 2017.
Other Research Projects
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: to evaluate the safety and tolerability of intranasal insulin in people with multiple sclerosis.
Secondary objective: to evaluate if intranasal insulin improves memory and learning in people with MS, as assessed by various neuropsychological tests. This research is being done because cognitive impairment is common in and devastating to people with MS. 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. 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 Partners Advancing Technology and Health Solutions
Site Principal Investigator: Ellen Mowry, M.D.
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