scholarly journals Fair data for next-generation management of multiple sclerosis

2017 ◽  
Vol 24 (9) ◽  
pp. 1151-1156 ◽  
Author(s):  
Liesbet M Peeters

Multiple sclerosis (MS) is a progressive demyelinating and degenerative disease of the central nervous system with symptoms depending on the disease type and the site of lesions and is featured by heterogeneity of clinical expressions and responses to treatment strategies. An individualized clinical follow-up and multidisciplinary treatment is required. Transforming the population-based management of today into an individualized, personalized and precision-level management is a major goal in research. Indeed, a complex and unique interplay between genetic background and environmental exposure in each case likely determines clinical heterogeneity. To reach insights at the individual level, extensive amount of data are required. Many databases have been developed over the last few decades, but access to them is limited, and data are acquired in different ways and differences in definitions and indexing and software platforms preclude direct integration. Most existing (inter)national registers and IT platforms are strictly observational or focus on disease epidemiology or access to new disease modifying drugs. Here, a method to revolutionize management of MS to a personalized, individualized and precision level is outlined. The key to achieve this next level is FAIR data.

2021 ◽  
Vol 12 ◽  
Author(s):  
Weipeng Wei ◽  
Denglei Ma ◽  
Lin Li ◽  
Lan Zhang

Multiple sclerosis (MS) is an autoimmune and chronic inflammatory demyelinating disease of the central nervous system (CNS), which gives rise to focal lesion in CNS and cause physical disorders. Although environmental factors and susceptibility genes are reported to play a role in the pathogenesis of MS, its etiology still remains unclear. At present, there is no complete cure, but there are drugs that decelerate the progression of MS. Traditional therapies are disease-modifying drugs that control disease severity. MS drugs that are currently marketed mainly aim at the immune system; however, increasing attention is being paid to the development of new treatment strategies targeting the CNS. Further, the number of neuroprotective drugs is presently undergoing clinical trials and may prove useful for the improvement of neuronal function and survival. In this review, we have summarized the recent application of drugs used in MS treatment, mainly introducing new drugs with immunomodulatory, neuroprotective, or regenerative properties and their possible treatment strategies for MS. Additionally, we have presented Food and Drug Administration-approved MS treatment drugs and their administration methods, mechanisms of action, safety, and effectiveness, thereby evaluating their treatment efficacy.


Author(s):  
Л.И. Герасимова-Мейгал ◽  
И.М. Сиренев

Цель исследования - изучение особенностей восприимчивости пациентов с рассеянным склерозом (РС) к холодовому воздействию с помощью функциональных тестов, характеризующих функцию терморегуляции. Как известно, РС - хроническое прогрессирующее аутоиммунное заболевание центральной нервной системы мультифакториальной природы, более часто встречающееся в регионах с холодным и влажным климатом. Нарушения терморегуляции вследствие автономной дисфункции являются характерным признаком РС, вместе с тем участию холодового фактора в развитии заболевания не придается существенного значения. Методика. Обследовано 32 пациента (17 мужчин и 15 женщин, средний возраст 29,6 ± 4,2 года) с установленным диагнозом: РС ремиттирующе-рецидивирующая форма течения (средняя продолжительность заболевания - 4,2 ± 2,7 года) и 18 практически здоровых лиц группы сравнения. Восприятие холода оценивали с помощью визуально-аналоговой шкалы. Продолжительность холод-индуцированной вазоконстрикции после локального холодового теста изучали по данным инфракрасной термометрии. Вегетативную регуляцию вазомоторных реакций оценивали по результатам анализа вызванных кожных вегетативных потенциалов (ВКВП). Результаты. На основе анализа самооценки восприятия холода у пациентов с РС показана низкая переносимость холодового фактора. При проведении локального холодового теста отмечено замедление восстановления температуры кожи кисти, что характерно для усиления холод-индуцированной вазоконстрикции. В группе пациентов с РС выявлено снижение параметров ВКВП ладоней и стоп, свидетельствующее о дефиците нейрогенного контроля терморегуляционных сосудистых реакций. Заключение. У пациентов с РС выявлены нарушения механизмов терморегуляции при действии холода, что обусловливает высокую индивидуальную восприимчивость к холоду у данной категории лиц. Сопоставление результатов анализа механизмов индивидуальной холод-индуцированной реактивности у пациентов с РС с данными эпидемиологических исследований приводит к заключению о потенциальном модулирующем влиянии холодового фактора на течение РС. The purpose of the present study was focused on the evaluation of the sensitivity to cold in multiple sclerosis (MS) patients by means of functional thermoregulatory based tests. MS is known to be a chronic autoimmune progressive disease of the central nervous system of multifactor origin that is very common in regions with cold and humid climate. Disorder of thermoregulation caused by autonomic dysfunction is a typical feature of MS, however the role of the cold in the disease development is still underestimated. Methods. Thirty two MS patients (17 males, 15 females, mean age 29,6 ± 4,2 years) with the remittent form of the disease (mean disease duration 4,2 ± 2,7 years) and 18 age-matched healthy controls volunteered to participate in this study. Susceptibility to cold was analyzed with the use of visual-analogous scale. The duration of cold-induced vasoconstriction after local cold test was estimated using by infrared thermometry. Autonomic regulation of vasomotor reactions was investigated with the help of the skin sympathetic response (SSR) analysis. Results. The analysis of self-reported perception of the cold in MS patients showed their low tolerance to cold. Slow recovery of the skin temperature of the hand in the local cold test observed in MS patients was considered as the aggravated cold-induced vasoconstriction. The decreased SSR in the hands and feet in MS patients was found that indicates the deficit of the neurogenic control of thermoregulatory vasomotor reactions. Conclusion. The results obtained demonstrate the impairment of thermoregulation under cold in MS patients that leads to higher individual susceptibility to cold of this group. Comparing of the data found in this study on the mechanisms of the individual cold-induced reactivity in MS patients with epidemiological surveys enable to conclude that cold environment has potential modulating effect of on the course of MS.


2021 ◽  
Vol 49 (3) ◽  
pp. 030006052199957
Author(s):  
Fernando Labella ◽  
Fernando Acebrón ◽  
María del Carmen Blanco-Valero ◽  
Alba Rodrígez-Martín ◽  
Ángela Monterde Ortega ◽  
...  

Multiple sclerosis (MS) is an inflammatory demyelinating disease of the central nervous system whose etiology remains unclear. It has been suggested that MS can be triggered by certain viruses; however, human immunodeficiency virus (HIV) infection is associated with reduced incidence of MS. We present the case of a young patient diagnosed with active relapsing-remitting MS whose clinical course substantially improved following HIV infection and treatment. The patient achieved no evidence of disease activity status without any disease-modifying drugs. Both HIV-induced immunosuppression and antiretroviral therapy may have attenuated the clinical course in this patient.


2019 ◽  
Vol 77 (2) ◽  
pp. 115-121
Author(s):  
Annina Ropponen ◽  
Katalin Gémes ◽  
Paolo Frumento ◽  
Gino Almondo ◽  
Matteo Bottai ◽  
...  

ObjectivesWe aimed to develop and validate a prediction model for the duration of sickness absence (SA) spells due to back pain (International Statistical Classification of Diseases and Related Health Problems 10th Revision: M54), using Swedish nationwide register microdata.MethodsInformation on all new SA spells >14 days from 1 January 2010 to 30 June 2012 and on possible predictors were obtained. The duration of SA was predicted by using piecewise constant hazard models. Nine predictors were selected for the final model based on a priori decision and log-likelihood loss. The final model was estimated in a random sample of 70% of the SA spells and later validated in the remaining 30%.ResultsOverall, 64 048 SA spells due to back pain were identified during the 2.5 years; 74% lasted ≤90 days, and 9% >365 days. The predictors included in the final model were age, sex, geographical region, employment status, multimorbidity, SA extent at the start of the spell, initiation of SA spell in primary healthcare and number of SA days and specialised outpatient healthcare visits from the preceding year. The overall c-statistic (0.547, 95% CI 0.542 to 0.552) suggested a low discriminatory capacity at the individual level. The c-statistic was 0.643 (95% CI 0.634 to 0.652) to predict >90 days spells, 0.686 (95% CI 0.676 to 0.697) to predict >180 spells and 0.753 (95% CI 0.740 to 0.766) to predict >365 days spells.ConclusionsThe model discriminates SA spells >365 days from shorter SA spells with good discriminatory accuracy.


2020 ◽  
Author(s):  
Xing Zhao ◽  
Feng Hong ◽  
Jianzhong Yin ◽  
Wenge Tang ◽  
Gang Zhang ◽  
...  

AbstractCohort purposeThe China Multi-Ethnic Cohort (CMEC) is a community population-based prospective observational study aiming to address the urgent need for understanding NCD prevalence, risk factors and associated conditions in resource-constrained settings for ethnic minorities in China.Cohort BasicsA total of 99 556 participants aged 30 to 79 years (Tibetan populations include those aged 18 to 30 years) from the Tibetan, Yi, Miao, Bai, Bouyei, and Dong ethnic groups in Southwest China were recruited between May 2018 and September 2019.Follow-up and attritionAll surviving study participants will be invited for re-interviews every 3-5 years with concise questionnaires to review risk exposures and disease incidence. Furthermore, the vital status of study participants will be followed up through linkage with established electronic disease registries annually.Design and MeasuresThe CMEC baseline survey collected data with an electronic questionnaire and face-to-face interviews, medical examinations and clinical laboratory tests. Furthermore, we collected biological specimens, including blood, saliva and stool, for long-term storage. In addition to the individual level data, we also collected regional level data for each investigation site.Collaboration and data accessCollaborations are welcome. Please send specific ideas to corresponding author at: [email protected].


2018 ◽  
Vol 13 ◽  
Author(s):  
Peter A. Cistulli ◽  
Kate Sutherland ◽  
Kristina Kairaitis ◽  
Brendon J. Yee

Obstructive Sleep Apnoea (OSA) is a common sleep disorder that is associated with daytime symptoms and a range of comorbidity and mortality. Continuous Positive Airway Pressure (CPAP) therapy is highly efficacious at preventing OSA when in use and has long been the standard treatment for newly diagnosed patients. However, CPAP therapy has well recognised limitations in real world effectiveness due to issues with patient acceptance and suboptimal usage. There is a clear need to enhance OSA treatment strategies and options. Although there are a range of alternative treatments (e.g. weight loss, oral appliances, positional devices, surgery, and emerging therapies such as sedatives and oxygen), generally there are individual differences in efficacy and often OSA will not be completely eliminated. There is increasing recognition that OSA is a heterogeneous disorder in terms of risk factors, clinical presentation, pathophysiology and comorbidity. Better characterisation of OSA heterogeneity will enable tailored approaches to therapy to ensure treatment effectiveness. Tools to elucidate individual anatomical and pathophysiological phenotypes in clinical practice are receiving attention. Additionally, recognising patient preferences, treatment enhancement strategies and broader assessment of treatment effectiveness are part of tailoring therapy at the individual level. This review provides a narrative of current treatment approaches and limitations and the future potential for individual tailoring to enhance treatment effectiveness.


2020 ◽  
pp. 140349482093427
Author(s):  
Kristin Farrants ◽  
Kristina Alexanderson

Background: Knowledge about sickness absence (SA) and disability pension (DP) among privately employed white-collar workers is very limited. Aims: This study aimed to explore SA and DP among privately employed white-collar women and men using different measures of SA to investigate differences by branch of industry, and to analyse the association between sociodemographic factors and SA. Methods: This was a population-based study of all 1,283,516 (47% women) privately employed white-collar workers in Sweden in 2012, using register data linked at the individual level. Several different measures of SA and DP were used. Logistic regression was used to investigate associations of sociodemographic factors with SA. Results: More women than men had SA (10.9% women vs. 4.5% men) and DP (1.8% women vs. 0.6% men). While women had a higher risk of SA than men and had more SA days per employed person, they did not have more SA days per person with SA than men. The risk of SA was higher for women (odds ratio (OR)=2.54 (95% confidence interval (CI) 2.51–2.58)), older individuals (OR age 18–24 years=0.58 (95% CI 0.56–0.60); age 55–64 years OR=1.43 (95% CI 1.40–1.46) compared to age 45–54 years), living in medium-sized towns (OR=1.05 (95% CI 1.03–1.06)) or small towns/rural areas (OR=1.13 (95% CI 1.11–1.15)), with shorter education than college/university (OR compulsory only=1.64 (95% CI 1.59–1.69); OR high school=1.38 (95% CI 1.36–1.40)), born outside the EU25 (OR=1.23 (95% CI 1.20–1.27)) and singles with children at home (OR=1.33 (95% CI 1.30–1.36)). Conclusions: SA and DP among privately employed white-collar workers were lower than in the general population. SA prevalence, length and risk varied by branch of industry, sex and other sociodemographic factors, however, depending on the SA measure used.


2018 ◽  
Vol 89 (10) ◽  
pp. 1050-1056 ◽  
Author(s):  
José Maria Andreas Wijnands ◽  
Feng Zhu ◽  
Elaine Kingwell ◽  
John David Fisk ◽  
Charity Evans ◽  
...  

ObjectiveLittle is known about disease-modifying treatments (DMTs) for multiple sclerosis (MS) and infection risk in clinical practice. We examined the association between DMTs and infection-related medical encounters.MethodsUsing population-based administrative data from British Columbia, Canada, we identified MS cases and followed them from their first demyelinating event (1996–2013) until emigration, death or study end (December 2013). Associations between DMT exposure (by DMT generation or class) and infection-related physician or hospital claims were assessed using recurrent time-to-events models, adjusted for age, sex, socioeconomic status, index year and comorbidity count. Results were reported as adjusted HRs (aHRs).ResultsOf 6793 MS cases, followed for 8.5 years (mean), 1716 (25.3%) were DMT exposed. Relative to no DMT, exposure to any first-generation DMT (beta-interferon or glatiramer acetate) was not associated with infection-related physician claims (aHR: 0.96; 95% CI 0.89 to 1.02), nor was exposure to these drug classes when assessed separately. Exposure to any second-generation DMT (oral DMT or natalizumab) was associated with an increased hazard of an infection-related physician claim (aHR: 1.47; 95% CI 1.16 to 1.85); when assessed individually, the association was significant for natalizumab (aHR: 1.59; 95% CI 1.19 to 2.11) but not the oral DMTs (aHR: 1.17; 95% CI 0.88 to 1.56). While no DMTs were associated with infection-related hospital claims, these hospitalisations were also uncommon.ConclusionExposure to first-generation DMTs was not associated with an altered infection risk. However, exposure to the second-generation DMTs was, with natalizumab associated with a 59% increased risk of an infection-related physician claim. Continued pharmacovigilance is warranted, including an investigation of the DMT-associated infection burden on patient outcomes.


Brain ◽  
2020 ◽  
Vol 143 (10) ◽  
pp. 2866-2868
Author(s):  
Cristina Gaudioso ◽  
Robert T Naismith

This scientific commentary refers to ‘Disease-modifying drugs can reduce disability progression in paediatric, adult and late-onset relapsing multiple sclerosis’, by Amato etal. (doi:10.1093/brain/awaa251).


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