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Past work demonstrates residual disability from relapses as well as high patient-reported rates of" /> <meta property="article:author" content="https://ua-birmingham.academia.edu/GaryCutter" /> <meta name="description" content="Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of" /> <title>(PDF) Impact of multiple sclerosis relapse: The NARCOMS participant perspective | Gary Cutter - Academia.edu</title> <link rel="canonical" href="https://www.academia.edu/73054429/Impact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective" /> <script async src="https://www.googletagmanager.com/gtag/js?id=G-5VKX33P2DS"></script> <script> window.dataLayer = window.dataLayer || []; function gtag(){dataLayer.push(arguments);} gtag('js', new Date()); gtag('config', 'G-5VKX33P2DS', { cookie_domain: 'academia.edu', send_page_view: false, }); gtag('event', 'page_view', { 'controller': "single_work", 'action': "show", 'controller_action': 'single_work#show', 'logged_in': 'false', 'edge': 'unknown', // Send nil if there is no A/B test bucket, in case some records get logged // with missing data - that way we can distinguish between the two cases. // ab_test_bucket should be of the form <ab_test_name>:<bucket> 'ab_test_bucket': null, }) </script> <script> var $controller_name = 'single_work'; var $action_name = "show"; var $rails_env = 'production'; var $app_rev = 'fdfcd03ea2af2a60c31d1f7e544fe08547bcb5a1'; var $domain = 'academia.edu'; var $app_host = "academia.edu"; var $asset_host = "academia-assets.com"; var $start_time = new Date().getTime(); var $recaptcha_key = "6LdxlRMTAAAAADnu_zyLhLg0YF9uACwz78shpjJB"; var $recaptcha_invisible_key = "6Lf3KHUUAAAAACggoMpmGJdQDtiyrjVlvGJ6BbAj"; var $disableClientRecordHit = false; </script> <script> window.require = { config: function() { return function() {} } } </script> <script> window.Aedu = window.Aedu || {}; window.Aedu.hit_data = null; window.Aedu.serverRenderTime = new Date(1732726672000); window.Aedu.timeDifference = new Date().getTime() - 1732726672000; </script> <script type="application/ld+json">{"@context":"https://schema.org","@type":"ScholarlyArticle","abstract":"Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of ineffective relapse treatment. To better characterize the impact of MS relapses on the patient, a relapse-specific survey was administered through the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry to 1000 registry participants who had reported at least one relapse in the past 12 months. Thirty percent of respondents confirmed lack of relapse treatment efficacy at one month and at three months. Relapses also impacted socioeconomic measures; for individuals still going to school or working, more than half missed days and their average loss of school or work was 12.7 days. An impact on household tasks was reported by 68% of respondents. A healthcare facility such as a hospital, emergency room or urgent care center was ...","author":[{"@context":"https://schema.org","@type":"Person","name":"Gary Cutter"}],"contributor":[],"dateCreated":"2022-03-04","dateModified":null,"datePublished":"2015-01-01","headline":"Impact of multiple sclerosis relapse: The NARCOMS participant perspective","inLanguage":"en","keywords":["Multiple sclerosis","Quality of life","Treatment Outcome","Humans","Female","Male","Registries","Recurrence","Middle Aged"],"locationCreated":null,"publication":"Multiple sclerosis and related disorders","publisher":{"@context":"https://schema.org","@type":"Organization","name":null},"image":null,"thumbnailUrl":null,"url":"https://www.academia.edu/73054429/Impact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective","sourceOrganization":[{"@context":"https://schema.org","@type":"EducationalOrganization","name":"ua-birmingham"}]}</script><link rel="stylesheet" media="all" 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"https://www.academia.edu/login?post_login_redirect_url=https%3A%2F%2Fwww.academia.edu%2F73054429%2FImpact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective%3Fauto%3Ddownload"; window.loswp.translateUrl = "https://www.academia.edu/login?post_login_redirect_url=https%3A%2F%2Fwww.academia.edu%2F73054429%2FImpact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective%3Fshow_translation%3Dtrue"; window.loswp.previewableAttachments = [{"id":83888906,"identifier":"Attachment_83888906","shouldShowBulkDownload":false}]; window.loswp.shouldDetectTimezone = true; window.loswp.shouldShowBulkDownload = true; window.loswp.showSignupCaptcha = false window.loswp.willEdgeCache = false; window.loswp.work = {"work":{"id":73054429,"created_at":"2022-03-04T14:55:17.756-08:00","from_world_paper_id":197653152,"updated_at":"2022-04-12T01:03:03.223-07:00","_data":{"abstract":"Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of ineffective relapse treatment. To better characterize the impact of MS relapses on the patient, a relapse-specific survey was administered through the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry to 1000 registry participants who had reported at least one relapse in the past 12 months. Thirty percent of respondents confirmed lack of relapse treatment efficacy at one month and at three months. Relapses also impacted socioeconomic measures; for individuals still going to school or working, more than half missed days and their average loss of school or work was 12.7 days. An impact on household tasks was reported by 68% of respondents. A healthcare facility such as a hospital, emergency room or urgent care center was ...","publication_date":"2015,,","publication_name":"Multiple sclerosis and related disorders"},"document_type":"paper","pre_hit_view_count_baseline":null,"quality":"high","language":"en","title":"Impact of multiple sclerosis relapse: The NARCOMS participant perspective","broadcastable":false,"draft":null,"has_indexable_attachment":true,"indexable":true}}["work"]; window.loswp.workCoauthors = [200766522]; window.loswp.locale = "en"; window.loswp.countryCode = "SG"; window.loswp.cwvAbTestBucket = ""; window.loswp.designVariant = "ds_vanilla"; window.loswp.fullPageMobileSutdModalVariant = "full_page_mobile_sutd_modal"; window.loswp.useOptimizedScribd4genScript = false; window.loswp.appleClientId = 'edu.academia.applesignon';</script><script defer="" src="https://accounts.google.com/gsi/client"></script><div class="ds-loswp-container"><div class="ds-work-card--grid-container"><div class="ds-work-card--container js-loswp-work-card"><div class="ds-work-card--cover"><div class="ds-work-cover--wrapper"><div class="ds-work-cover--container"><button class="ds-work-cover--clickable js-swp-download-button" data-signup-modal="{"location":"swp-splash-paper-cover","attachmentId":83888906,"attachmentType":"pdf"}"><img alt="First page of “Impact of multiple sclerosis relapse: The NARCOMS participant perspective”" class="ds-work-cover--cover-thumbnail" src="https://0.academia-photos.com/attachment_thumbnails/83888906/mini_magick20220412-27479-7kja52.png?1649761253" /><img alt="PDF Icon" class="ds-work-cover--file-icon" src="//a.academia-assets.com/assets/single_work_splash/adobe.icon-574afd46eb6b03a77a153a647fb47e30546f9215c0ee6a25df597a779717f9ef.svg" /><div class="ds-work-cover--hover-container"><span class="material-symbols-outlined" style="font-size: 20px" translate="no">download</span><p>Download Free PDF</p></div><div class="ds-work-cover--ribbon-container">Download Free PDF</div><div class="ds-work-cover--ribbon-triangle"></div></button></div></div></div><div class="ds-work-card--work-information"><h1 class="ds-work-card--work-title">Impact of multiple sclerosis relapse: The NARCOMS participant perspective</h1><div class="ds-work-card--work-authors ds-work-card--detail"><a class="ds-work-card--author js-wsj-grid-card-author ds2-5-body-md ds2-5-body-link" data-author-id="200766522" href="https://ua-birmingham.academia.edu/GaryCutter"><img alt="Profile image of Gary Cutter" class="ds-work-card--author-avatar" src="//a.academia-assets.com/images/s65_no_pic.png" />Gary Cutter</a></div><div class="ds-work-card--detail"><p class="ds-work-card--detail ds2-5-body-sm">2015, Multiple sclerosis and related disorders</p></div><p class="ds-work-card--work-abstract ds-work-card--detail ds2-5-body-md">Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of ineffective relapse treatment. To better characterize the impact of MS relapses on the patient, a relapse-specific survey was administered through the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry to 1000 registry participants who had reported at least one relapse in the past 12 months. Thirty percent of respondents confirmed lack of relapse treatment efficacy at one month and at three months. Relapses also impacted socioeconomic measures; for individuals still going to school or working, more than half missed days and their average loss of school or work was 12.7 days. An impact on household tasks was reported by 68% of respondents. A healthcare facility such as a hospital, emergency room or urgent care center was ...</p><div class="ds-work-card--button-container"><button class="ds2-5-button js-swp-download-button" data-signup-modal="{"location":"continue-reading-button--work-card","attachmentId":83888906,"attachmentType":"pdf","workUrl":"https://www.academia.edu/73054429/Impact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective"}">See full PDF</button><button class="ds2-5-button ds2-5-button--secondary js-swp-download-button" data-signup-modal="{"location":"download-pdf-button--work-card","attachmentId":83888906,"attachmentType":"pdf","workUrl":"https://www.academia.edu/73054429/Impact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective"}"><span class="material-symbols-outlined" style="font-size: 20px" translate="no">download</span>Download PDF</button></div></div></div></div><div data-auto_select="false" data-client_id="331998490334-rsn3chp12mbkiqhl6e7lu2q0mlbu0f1b" data-doc_id="83888906" data-landing_url="https://www.academia.edu/73054429/Impact_of_multiple_sclerosis_relapse_The_NARCOMS_participant_perspective" data-login_uri="https://www.academia.edu/registrations/google_one_tap" data-moment_callback="onGoogleOneTapEvent" id="g_id_onload"></div><div class="ds-top-related-works--grid-container"><div class="ds-related-content--container ds-top-related-works--container"><h2 class="ds-related-content--heading">Related papers</h2><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="0" data-entity-id="118044147" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/118044147/Differences_In_Multiple_Sclerosis_Relapse_Rates_Based_On_Patient_Adherence_Average_Daily_Dose_And_Persistence_With_Disease_Modifying_Therapy_Observations_Based_on_Real_World_Data">Differences In Multiple Sclerosis Relapse Rates Based On Patient Adherence, Average Daily Dose, And Persistence With Disease-Modifying Therapy: Observations Based on Real-World Data</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="88347050" href="https://independent.academia.edu/AugustoGrinspan">Augusto Grinspan</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 2015</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Differences In Multiple Sclerosis Relapse Rates Based On Patient Adherence, Average Daily Dose, And Persistence With Disease-Modifying Therapy: Observations Based on Real-World Data","attachmentId":113761251,"attachmentType":"pdf","work_url":"https://www.academia.edu/118044147/Differences_In_Multiple_Sclerosis_Relapse_Rates_Based_On_Patient_Adherence_Average_Daily_Dose_And_Persistence_With_Disease_Modifying_Therapy_Observations_Based_on_Real_World_Data","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/118044147/Differences_In_Multiple_Sclerosis_Relapse_Rates_Based_On_Patient_Adherence_Average_Daily_Dose_And_Persistence_With_Disease_Modifying_Therapy_Observations_Based_on_Real_World_Data"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="1" data-entity-id="70617901" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/70617901/Relapse_recovery_in_multiple_sclerosis_Effect_of_treatment_and_contribution_to_long_term_disability">Relapse recovery in multiple sclerosis: Effect of treatment and contribution to long-term disability</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="46512825" href="https://independent.academia.edu/MariannPolgarturcsanyi">Mariann Polgar-turcsanyi</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Multiple Sclerosis Journal - Experimental, Translational and Clinical</p><p class="ds-related-work--abstract ds2-5-body-sm">Background Although recovery from relapses in MS appears to contribute to disability, it has largely been ignored as a treatment endpoint and disability predictor. Objective To identify demographic and clinical predictors of relapse recovery in the first 3 years and examine its contribution to 10-year disability and MRI outcomes. Methods Relapse recovery was retrospectively assessed in 360 patients with MS using the return of the Expanded Disability Status Scale (EDSS), Functional System Scale and neurologic signs to baseline at least 6 months after onset. Univariate and multivariable models were used to associate recovery with demographic and clinical factors and predict 10-year outcomes. Results Recovery from relapses in the first 3 years was better in patients who were younger, on disease-modifying treatment, with a longer disease duration and without bowel or bladder symptoms. For every incomplete recovery, 10-year EDSS increased by 0.6 and 10-year timed 25-foot walk increased b...</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Relapse recovery in multiple sclerosis: Effect of treatment and contribution to long-term disability","attachmentId":80294444,"attachmentType":"pdf","work_url":"https://www.academia.edu/70617901/Relapse_recovery_in_multiple_sclerosis_Effect_of_treatment_and_contribution_to_long_term_disability","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/70617901/Relapse_recovery_in_multiple_sclerosis_Effect_of_treatment_and_contribution_to_long_term_disability"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="2" data-entity-id="12754569" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/12754569/Assessing_relapses_and_response_to_relapse_treatment_in_patients_with_multiple_sclerosis_a_nursing_perspective">Assessing relapses and response to relapse treatment in patients with multiple sclerosis: a nursing perspective</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="31798904" href="https://independent.academia.edu/JuneHalper">June Halper</a></div><p class="ds-related-work--metadata ds2-5-body-xs">International journal of MS care, 2012</p><p class="ds-related-work--abstract ds2-5-body-sm">There are currently no assessment tools that focus on evaluating patients with multiple sclerosis (MS) who are experiencing a relapse or that evaluate patients&#39; response to acute relapse treatment. In practice, assessments are often subjective, potentially resulting in overlooked symptoms, unaddressed patient concerns, unnoticed or underrecognized side effects of therapies (both disease modifying and symptomatic), and suboptimal therapeutic response. Systematic evaluation of specific symptoms and potential side effects can minimize the likelihood of overlooking important information. However, given the number of potential symptoms and adverse events that patients may experience, an exhaustive evaluation can be time-consuming. Clinicians are thus challenged to balance thoroughness with brevity. 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class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="6663739" href="https://aveiro.academia.edu/PauloFontoura">Paulo Fontoura</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Archives of Neurology, 2006</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Clinical and Demographic Predictors of Long-term Disability in Patients With Relapsing-Remitting Multiple Sclerosis","attachmentId":53905791,"attachmentType":"pdf","work_url":"https://www.academia.edu/33941319/Clinical_and_Demographic_Predictors_of_Long_term_Disability_in_Patients_With_Relapsing_Remitting_Multiple_Sclerosis","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/33941319/Clinical_and_Demographic_Predictors_of_Long_term_Disability_in_Patients_With_Relapsing_Remitting_Multiple_Sclerosis"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="8" data-entity-id="68226034" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/68226034/Relating_Treatment_Effect_on_Relapses_with_Disability_Worsening_in_Multiple_Sclerosis_Patients_Age_Matters">Relating Treatment Effect on Relapses with Disability Worsening in Multiple Sclerosis Patients: Age Matters</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="3505765" href="https://independent.academia.edu/M%C3%A1rioVeloso">Mário Veloso</a></div><p class="ds-related-work--metadata ds2-5-body-xs">2019</p><p class="ds-related-work--abstract ds2-5-body-sm">Objective: To determine whether treatment efficacy on relapses do enable to predict treatment efficacy on disability worsening in multiple sclerosis patients and whether that efficacy is dependent on age. Methods: The relevant features of published randomized controlled clinical trials in MS were extracted according to defined criteria namely data on age baseline information relapses and proportion of progressing patients. Regression analyses were performed to analyse the relationship between treatment efficacy on relapses and on confirmed disability progression over trials duration as well as between age and those clinical outcomes. Results: Fifty-three trials comprising 76 comparison arms and totalising 34.765 patients were selected and engaged in the subsequent analyses. Significant correlation was observed between the treatment effect on relapses and on confirmed disability progression (adjusted R2=0.3872). A strong association was found between the baseline EDSS and baseline ag...</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Relating Treatment Effect on Relapses with Disability Worsening in Multiple Sclerosis Patients: Age Matters","attachmentId":78778616,"attachmentType":"pdf","work_url":"https://www.academia.edu/68226034/Relating_Treatment_Effect_on_Relapses_with_Disability_Worsening_in_Multiple_Sclerosis_Patients_Age_Matters","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/68226034/Relating_Treatment_Effect_on_Relapses_with_Disability_Worsening_in_Multiple_Sclerosis_Patients_Age_Matters"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="9" data-entity-id="15130078" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/15130078/Impact_of_multiple_sclerosis_relapses_on_progression_diminishes_with_time">Impact of multiple sclerosis relapses on progression diminishes with time</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="34167104" href="https://independent.academia.edu/YinshanZhao">Yinshan Zhao</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Neurology, 2009</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Impact of multiple sclerosis relapses on progression diminishes with time","attachmentId":43556096,"attachmentType":"pdf","work_url":"https://www.academia.edu/15130078/Impact_of_multiple_sclerosis_relapses_on_progression_diminishes_with_time","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/15130078/Impact_of_multiple_sclerosis_relapses_on_progression_diminishes_with_time"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div></div></div><div class="ds-sticky-ctas--wrapper js-loswp-sticky-ctas hidden"><div class="ds-sticky-ctas--grid-container"><div class="ds-sticky-ctas--container"><button class="ds2-5-button js-swp-download-button" data-signup-modal="{"location":"continue-reading-button--sticky-ctas","attachmentId":83888906,"attachmentType":"pdf","workUrl":null}">See full PDF</button><button class="ds2-5-button ds2-5-button--secondary js-swp-download-button" data-signup-modal="{"location":"download-pdf-button--sticky-ctas","attachmentId":83888906,"attachmentType":"pdf","workUrl":null}"><span class="material-symbols-outlined" style="font-size: 20px" translate="no">download</span>Download PDF</button></div></div></div><div class="ds-below-fold--grid-container"><div class="ds-work--container js-loswp-embedded-document"><div class="attachment_preview" data-attachment="Attachment_83888906" style="display: none"><div class="js-scribd-document-container"><div class="scribd--document-loading js-scribd-document-loader" style="display: block;"><img alt="Loading..." src="//a.academia-assets.com/images/loaders/paper-load.gif" /><p>Loading Preview</p></div></div><div style="text-align: center;"><div class="scribd--no-preview-alert js-preview-unavailable"><p>Sorry, preview is currently unavailable. 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