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June 2022; 12 (3) Research

Disparities in Telehealth Care in Multiple Sclerosis

Ruth Ann Marrie, Leanne Kosowan, Gary Cutter, Robert Fox, Amber Salter
First published March 29, 2022, DOI: https://doi.org/10.1212/CPJ.0000000000001167
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Article Information

vol. 12 no. 3 223-233
DOI: 
https://doi.org/10.1212/CPJ.0000000000001167
Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
2163-0402
Online ISSN: 
2163-0933
History: 
  • Received December 8, 2021
  • Accepted February 28, 2022
  • First Published March 29, 2022.

Article Versions

Copyright & Usage: 
© 2022 American Academy of Neurology

Author Disclosures

    1. Ruth Ann Marrie, PhD,
    2. Leanne Kosowan, MSc,
    3. Gary Cutter, PhD,
    4. Robert Fox, MD, MSc and
    5. Amber Salter, PhD
  1. Ruth Ann Marrie, PhD,
    2. Scientific Advisory Boards:

    1. None

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. None

    Editorial Boards:

    1. Multiple Sclerosis Journal, Editorial BoardMultiple Sclerosis Journal-ETC, Co-Editor (ended Dec 2020)Neurology, Editorial Board (2022)

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. Roche (no direct funding to me), Biogen (no direct funding to me)

    Research Support, Government Entities:

    1. Received support as principal investigator from theCanadian Institutes of Health Research (2010-2022), and Research Manitoba (2014-2022) and as co-investigator from US Department of Defense (2020-2023).

    Research Support, Academic Entities:

    1. Waugh Family Chair in Multiple Sclerosis

    Research Support, Foundations and Societies:

    1. Received support as principal investigator from Multiple Sclerosis Society of Canada (2009-2022) and theNational Multiple Sclerosis Society (2013-2021), and as co-principal investigator from Multiple Sclerosis Scientific Foundation (2009-2021). Received support from Consortium of Multiple Sclerosis Centers (2004-2009, 2011-2014, 2016-2022), Crohn's and Colitis Canada (2014-2022), The Arthritis Society (2021-2022)

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  2. Leanne Kosowan, MSc,
    3. Scientific Advisory Boards:

    1. None

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. None

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. None

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  3. Gary Cutter, PhD,
    4. Scientific Advisory Boards:

    1. Data and Safety Monitoring Boards: AMO Pharma, Astra-Zeneca, Avexis Pharmaceuticals, Biolinerx, Brainstorm Cell Therapeutics, Bristol Meyers Squibb/Celgene, CSL Behring, Galmed Pharmaceuticals, Green Valley Pharma, Immunic, Mapi Pharmaceuticals LTD, Merck, Merck/Pfizer, Mitsubishi Tanabe Pharma Holdings, Opko Biologics, Novartis, Regeneron, Sanofi-Aventis, Reata Pharmaceuticals, Teva pharmaceuticals, VielaBio Inc, , NHLBI (Protocol Review Committee), NICHD (OPRU oversight committee).

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. None

    Editorial Boards:

    1. Multiple Sclerosis Journal: editorial board, (11 yrs); Multiple Sclerosis and Related Disorders: Editorial board; (1 yr);Am journal of the Society of Nephrology. Statistical editor; contributing statistical help (6 yrs); Alzheimer's and Dementia (5) yrs; Neurology Clinical Practice (7yrs);

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. Alexion, Antisense Therapeutics, Biogen, Clinical Trial Solutions LLC, Genzyme, Genentech, GW Pharmaceuticals, Immunic, Klein-Buendel Incorporated, Medimmune/Viela Bio/Horizon Pharmaceuticals, Merck/Serono, Neurogenesis LTD, Novartis, Osmotica Pharmaceuticals, Perception Neurosciences, Protalix Biotherapeutics, Recursion/Cerexis Pharmaceuticals, Regeneron, Reckover Pharmaceuticals, Roche.Therapeutics.

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. President of Pythagoras Inc. a consulting company

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. U01 AR071133 (Bammam)12/6/2016 ? 11/30/20226 calendarNIH/NIAMS$ 6,942,009 (total funds)The Exercise and Physical Activity Collaborative Team (ExPact): A Proposed MoTrPAC Clinical CenterThe goals are to help lead the NIH Common Fund initiative ? Molecular Transducers of Physical Activity Consortium (MoTrPAC) ? by serving as one of six adult clinical centers conducting a large-scale, randomized, controlled trial (RCT) of resistance vs. aerobic exercise training vs. no-exercise control. The RCT will be complemented by molecular acute response studies in RCT participants as well as highly trained athletes; all with the goal of generating molecular maps that reveal key underpinnings of exercise-induced health benefits.No Number (Motl) 01/01/2020 ? 06/30/2021 .87 calendarConsortium of Multiple Sclerosis Centers $39,996 total costsExamining Patterns and Correlates of Wellness in Persons with Multiple Sclerosis who use Wheelchairs5U54NS115054 (PI: Kaminski, sub-PI: Cutter) 09/01/2019 ? 05/31/2024 0.6 calendarNIH/NINDS $321,265 total costsRare Disease Network for Myasthenia GravisWe propose development of the Myasthenia Gravis Clinical Research Consortium (MGNet) to coordinate investigators in collection of detailed clinical information and biological specimen along with performance of pilot investigations of a therapeutic and biomarker discovery. We link our efforts to a program to develop new investigators in myasthenia gravis. This is all done with the purpose of enhancing performance clinical trials and care of patients to one day find a cure for myasthenia gravis.5R01AG057684 (Kennedy) 09/15/2017 ? 03/31/2022 0.12 calendarNIH/NIA $3,242,015 total costsIn Silico Screening of Medications for Slowing Alzheimer?s Disease ProgressionIn this proposal, we will explore drug repurposing, in which medications approved to treat other illnesses are evaluated for potential bene&#64257;ts in Alzheimer's disease (AD), to improve the ef&#64257;ciency of the drug development process, which currently ends in failure for most candidate medications despite considerable investment of both time and resources. We will apply data mining, or pattern recognition, algorithms to the concomitant medications taken by subjects in previous AD clinical trials that are part of our meta-database of more than 6,500 individuals and by participants in Medicare Part D with more than 787,000 individuals. This approach will allow us to screen hundreds of drugs for effects in slowing the progression of AD, which will guide future clinical trials of novel therapeutic agents.1U01HL119242 (PI: Szychowski)09/01/2014 ? 11/30/2021.96 calendarNIH/NHLBI$2,744,642 total costsChronic Hypertension and Pregnancy (CHAP): Data Coordinating CenterCHAP is a pragmatic multi-center randomized trial of pregnant women with mild chronic hypertension to evaluate the benefits and harms of antihypertensive therapy to a goal <140/90 mmHg (as recommended for the general population in the US) compared with ACOG?s current policy of expectant management of mild chronic hypertension in pregnancy. The trial will enroll 2,404 women across more than 60 clinical sites. R01HD098132-01A1 (PI: Subramaniam) 01/20/2020 ? 12/31/2024 .24 calendarNIH/NICHD $3,242,752 total costsChildhood Pulmonary and Related Outcomes after Perinatal Exposure to Adjunctive Azithromycin Prophylaxis for Cesarean Delivery (C/SOAP Follow-Up Study)We propose a US multi-center long-term follow-up study of children from the parent C/SOAP trial at age 6-8 years to evaluate childhood respiratory and gastrointestinal health effects after perinatal exposure to adjunctive azithromycin; findings from this study will be used to inform and strengthen national and global health care policy regarding the use of adjunctive azithromycin to reduce maternal infection after cesarean delivery.R01AI148359 (PI: Geisler)05/11/2020 ? 04/30/2025 0.6 calendarNIH/NIAID $3,201,254 total costsHost Immune Responses to Chlamydia trachomatis Candidate Vaccine Antigens and their Association with Clinical Correlates of Protective Immunity in WomenCurrent chlamydia prevention and control efforts have been unable to reduce chlamydia infection rates, which provides strong rationale for development of a chlamydia vaccine to prevent chlamydia and its reproductive sequelae. This project will evaluate systemic and mucosal cellular and humoral immune responses induced by promising chlamydia vaccine candidate antigens and will assess association of the immune responses with clinical correlates of protection against chlamydia in women (spontaneous clearance of chlamydia and absence of reinfection after treatment). Findings may advance chlamydia vaccine development efforts and lead to formulation of these candidate antigens into a chlamydia vaccine for a phase I study.5U01NS092595 (PI: Bebin)06/01/2016 ? 05/31/20220.24 calendarNIH/NINDS$7,084,395 total costsPreventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis ComplexThis study focuses on the developmental impact of early vigabatrin treatment in infants with Tuberous Sclerosis Complex who are at risk of developing epilepsy. Also, the study aims to determine the effectiveness of early vigabatrin treatment in clinical seizure prevention and its impact on the development of drug resistant epilepsy at 24months of age. This is the first seizure prevention trial in patients with TSC in the United States.1R01HD088646 (PI: Katheria, sub PI: Szychowski) 04/01/2017- 03/31/2022 0.6 CMNIH/NCHHD$547,854 (total funds)Premature Infants Receiving Cord Milking Or Delayed Cord ClampingDelayed cord clamping reduces overall bleeding in the brain of premature infants, but not the most severe types. ?Milking? the umbilical cord, a method used to transfer blood from the placenta into the baby before the umbilical cord is clamped, may provide additional blood volume to the brain and other vital organs thereby reducing bleeding in the brain and improving long-term outcomes in premature babies. This study will determine whether umbilical cord milking reduces bleeding in the brain or death in premature newborns delivered by Cesarean section compared to delaying clamping of the umbilical cord. P30DK079337 (PI: Agarwal) 08/01/2018? 07/31/2023 1.77 CMNIH/NIDDK $1,136,699 (total funds)O?Brien Center for Acute Kidney Injury ResearchAcute kidney injury (AKI) is a major cause for morbidity and mortality in hospitalized patients and is being increasingly recognized as a cause for chronic kidney disease. AKI doubles the length of stay in the hospital, increasing health care resources. The UAB-UCSD O'Brien Center has brought together a team of investigators to serve unmet needs of our investigator base and to fill the gaps in knowledge in the field of AKI and AKI-related research.K23HD091849 (Gerstenecker)09/12/2018 ? 08/31/2023 0 calendar, Co-MentorNIH/NICHHD $630,875 total costsInvestigating the Impact of Cognition on Capacity in Multiple SclerosisAt a time in which increased cognitive ability is needed to make complex financial and medical decisions, people with MS are often experiencing cognitive decline; surprisingly though, research into the ability of people with MS to make complex financial and medical decisions is rare. This study proposes to investigate financial and medical decisional capacity and its clinical and neuroanatomical correlates in people with relapsing- remitting MS and progressive MS. The ultimate value of this research will be to act as a necessary first-step in the development of a targeted capacity rehabilitation program for people diagnosed with MS.K23HL127100 (Lebensburger)04/01/2015 ? 03/31/2021 0 calendar, MentorNIH/NHLBI $916,445 total costsChronobiology and Chronopharmacology to Prevent Sickle Cell NephropathyHypertension is a known risk factor for stroke in sickle cell disease and in other diseases associated with adverse cardiovascular outcomes. Within the context of a feasibility trial, this proposal will develop vital background data to understand the acceptability of, adherence to, and dosing strategy for losartan prior to conducting a definitive trial for adolescent sickle cell disease patients with abnormal circadian blood pressure. A prospective cohort study will also be conducted to define the relationship of urine and blood biomarkers on the development of abnormal nocturnal blood pressure dipping and kidney injury.PENDINGOSP 532909 (Lal) 04/01/2022 ? 03/31/2027 0.6 CMNIH $935,194Optimization of Saturation Targets and Resuscitation Trial (OptiSTART)R34HL157412 (Leesar) 04/01/2021 ? 03/31/2024 0.6 CMNIH/NHLBI $668,250 total costsEffects of Crushed Ticagrelor and no Fentanyl Versus Eptifibatide Bolus+Ticagrelor and Fentanyl in Patients with NSTE-ACS Undergoing Early PCI: A randomized Trial (CTEP trial)R21HD104996 (Rogers) 09/01/2021 ? 08/31/2023 0.6 CMNIH $408,375 total costsMicrobiome as a Novel Mechanism of Exercise Training Effects in Multiple SclerosisR01HL154109 (Sanders) 04/01/2021 ? 03/31/2026 0.6 CMNIH/NHLBI $2,929,087 total costsDietary Sodium & Potassium and Aortic StiffnessR01TR003741 (Danila) 04/01/2021 ? 03/31/2024 0.6 CMNIH/NCATS $2,937,048 total costsDigital Health for Rheumatology Care in COVID19 EraOSP 532630 (Motl)06/01/2021? 05/31/2024 0.6 CMBristol-Myers Squibb Foundation, Inc. $770,799 total costsExercise Promotion and Outcomes Among African-Americans with Multiple Sclerosis Living in Rural CommunitiesOSP 533051 (Leesar)04/01/2022 ? 03/31/2025 0.6 CMNIH/NHLBI $668,250 total costsPlatelet Inhibition with Crushed Ticagrelor versus Eptifibatide Bolus in Patients with Non-ST-Segment Elevation Myocardial Infarction undergoing Ad Hoc PCI with no OpiodsR01HD108618 (Taub)04/01/2022 ? 03/31/2024 0.6 CMNIH/NCHHD $1,183,924 total costsA Therapy for Long COVID Brain Fog and Cognitive ImpairmentU24HL155807 (Aban)07/01/2021 ? 06/30/2027 0.6 CMNIH/NHLBI $1,844,073 total costs2/2 Video Telehealth Pulmonary Rehabilitation to Reduce Hospital Readmission in Chronic Obstructive Pulmonary Disease (Tele-COPD)R01AG070049 (Taub)08/01/2021? 07/31/2025 0.6 CMNIH/NCHHD $2,312,394 total costsTransferring Speed of Processing Gains to Everyday Cognitive Tasks after StrokeR01DK131079 (Novak)12/01/2021 ? 11/30/2026 1.2 CMNIH/NIDDK $3,764,635 total costsUnraveling Clinical and Pathophysiologic Disparities in African Americans with IgA Nephropathy)To address the historic lack of research into this chronic disease in African American patients, we will identify the first large, well-characterized, cohort of African American patients with IgA nephropathy and will assess factors associated with their disease pathogenesis, severity, and progression.Role: Co-InvestigatorK23DK131291 (Farrington) 09/01/2021 ? 08/31/2026 no effort, consultantNIH/NIDDK $943,378The Role of the Immune System in Arteriovenous Fistula FailureOSP 531819 (Agarwal)06/01/2021 ? 05/31/2025 0.6 CMNIH $2,830,956Biological and Clinical Characterization of Kidney Patients Post-Acute Covid19 (BACKPAC) OTA-21-015BOSP 532702 (Aban)02/01/2022 ? 01/31/20280.6 CMNIH$281,882Early Epilepsy Surgery in Tuberous Sclerosis Complex

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. The MG Registry receives funding from the MyastheniaGravis Foundation of America

    Stock/Stock Options/Board of Directors Compensation:

    1. Consortium of MS Centers - Past President - onlyexpenses covered

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  4. Robert Fox, MD, MSc and
    5. Scientific Advisory Boards:

    1. AB Science, Biogen, Genzyme, Immunic, Janssen, Novartis, and Sanofi

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. None

    Editorial Boards:

    1. Editorial Board, NeurologyEditorial Board, Multiple Sclerosis Journal

    Patents:

    1. NONE

    Publishing Royalties:

    1. Multiple Sclerosis and Related Disorders, Demos Medical, 2019

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. AB Science, Biogen, Celgene, EMD Serono, Genentech, Genzyme, Greenwich Biosciences, Immunic, Janssen, Novartis, Sanofi, and TG Therapeutics

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. Research contracts from Biogen, Novartis, and Sanofi.

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. None

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  5. Amber Salter, PhD
    6. Scientific Advisory Boards:

    1. (1) DSMB for Premature Infants Receiving Milking or Delayed Cord Clamping: PREMOD2(2) OSMB for Central Vein Sign: A Diagnostic Biomarker in Multiple Sclerosis

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. None

    Editorial Boards:

    1. Circulation: Cardiovascular Imaging, Statistical Editor, 2018-2021Neurology, Editorial board member, 2021

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. (1) Department of Defense, Principal Investigator, 2021-2024

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1) Consortium of Multiple Sclerosis Centers (2) National Multiple Sclerosis Society

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  1. Department of Internal Medicine (RAM), Department of Community Health Sciences (RAM), and Department of Family Medicine (LK), Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada; Department of Biostatistics (GC), University of Alabama in Birmingham; Mellen Center for Multiple Sclerosis (RF), Neurological Institute, Cleveland Clinic, OH; and Department of Neurology (AS), UT Southwestern, Dallas.
  1. Correspondence
    Dr. Marrie rmarrie{at}hsc.mb.ca
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