scholarly journals The Multiple Sclerosis Data Alliance Catalogue

2021 ◽  
Vol 23 (6) ◽  
pp. 261-268
Author(s):  
Lotte Geys ◽  
Tina Parciak ◽  
Ashkan Pirmani ◽  
Robert McBurney ◽  
Hollie Schmidt ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Personal Data ◽  
Data Sources ◽  
Data Quality Control ◽  
Inclusion Criteria ◽  
Current Version ◽  
Real World Data ◽  
Web Based ◽  
Health Technologies ◽  
The Status

Abstract Background: One of the major objectives of the Multiple Sclerosis Data Alliance (MSDA) is to enable better discovery of multiple sclerosis (MS) real-world data (RWD). Methods: We implemented the MSDA Catalogue, which is available worldwide. The current version of the MSDA Catalogue collects descriptive information on governance, purpose, inclusion criteria, procedures for data quality control, and how and which data are collected, including the use of e-health technologies and data on collection of COVID-19 variables. The current cataloguing procedure is performed in several manual steps, securing an effective catalogue. Results: Herein we summarize the status of the MSDA Catalogue as of January 6, 2021. To date, 38 data sources across five continents are included in the MSDA Catalogue. These data sources differ in purpose, maturity, and variables collected, but this landscaping effort shows that there is substantial alignment on some domains. The MSDA Catalogue shows that personal data and basic disease data are the most collected categories of variables, whereas data on fatigue measurements and cognition scales are the least collected in MS registries/cohorts. Conclusions: The Web-based MSDA Catalogue provides strategic overview and allows authorized end users to browse metadata profiles of data cohorts and data sources. There are many existing and arising RWD sources in MS. Detailed cataloguing of MS RWD is a first and useful step toward reducing the time needed to discover MS RWD sets and promoting collaboration.

In or Out?

2018 ◽  
Author(s):  
Catherine E. De Vries
Keyword(s):  
Public Opinion ◽  
Status Quo ◽  
Data Sources ◽  
Fine Grained ◽  
Alternative State ◽  
Empirical Measurement ◽  
The Status ◽  
People’S Attitudes ◽  
Over Time ◽  
The Eu

This chapter introduces a benchmark theory of public opinion towards European integration. Rather than relying on generic labels like support or scepticism, the chapter suggests that public opinion towards the EU is both multidimensional and multilevel in nature. People’s attitudes towards Europe are essentially based on a comparison between the benefits of the status quo of membership and those associated with an alternative state, namely one’s country being outside the EU. This comparison is coined the ‘EU differential’. When comparing these benefits, people rely on both their evaluations of the outcomes (policy evaluations) and the system that produces them (regime evaluations). This chapter presents a fine-grained conceptualization of what it means to be an EU supporter or Eurosceptic; it also designs a careful empirical measurement strategy to capture variation, both cross-nationally and over time. The chapter cross-validates these measures against a variety of existing and newly developed data sources.

Microvascular Transposition Without Teflon: A Single Institution's 17-Year Experience Treating Trigeminal Neuralgia

2021 ◽  
Vol 20 (4) ◽  
pp. 397-405
Author(s):  
Andrew R Pines ◽  
Richard J Butterfield ◽  
Evelyn L Turcotte ◽  
Jose O Garcia ◽  
Noel De Lucia ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Postoperative Pain ◽  
Trigeminal Neuralgia ◽  
Fibrin Glue ◽  
Microvascular Decompression ◽  
Inclusion Criteria ◽  
Kaplan Meier ◽  
Trigeminal Nerve Root

Abstract BACKGROUND Trigeminal neuralgia (TN) refractory to medical management is often treated with microvascular decompression (MVD) involving the intracranial placement of Teflon. The placement of Teflon is an effective treatment, but does apply distributed pressure to the nerve and has been associated with pain recurrence. OBJECTIVE To report the rate of postoperative pain recurrence in TN patients who underwent MVD surgery using a transposition technique with fibrin glue without Teflon. METHODS Patients were eligible for our study if they were diagnosed with TN, did not have multiple sclerosis, and had an offending vessel that was identified and transposed with fibrin glue at our institution. All eligible patients were given a follow-up survey. We used a Kaplan-Meier (KM) model to estimate overall pain recurrence. RESULTS A total of 102 patients met inclusion criteria, of which 85 (83%) responded to our survey. Overall, 76 (89.4%) participants responded as having no pain recurrence. Approximately 1-yr pain-free KM estimates were 94.1% (n = 83), 5-yr pain-free KM estimates were 94.1% (n = 53), and 10-yr pain-free KM estimates were 83.0% (n = 23). CONCLUSION Treatment for TN with an MVD transposition technique using fibrin glue may avoid some cases of pain recurrence. The percentage of patients in our cohort who remained pain free at a maximum of 17 yr follow-up is on the high end of pain-free rates reported by MVD studies using Teflon. These results indicate that a transposition technique that emphasizes removing any compression near the trigeminal nerve root provides long-term pain-free rates for patients with TN.

scholarly journals Patient’s point of view on the use of telemedicine in multiple sclerosis: a web-based survey

2021 ◽  
Author(s):  
Doriana Landi ◽  
Marta Ponzano ◽  
Carolina Gabri Nicoletti ◽  
Gaia Cola ◽  
Gianluca Cecchi ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Point Of View ◽  
Physical Parameters ◽  
Chronic Medical Conditions ◽  
Socioeconomic Conditions ◽  
Web Based ◽  
Healthcare Facilities ◽  
Advantages And Disadvantages ◽  
Disease Characteristics ◽  
Degree Of Disability

AbstractRestrictions in the access to healthcare facilities during COVID-19 pandemic have raised the need for remote monitoring of chronic medical conditions, including multiple sclerosis (MS). In order to enable the continuity of care in these circumstances, many telemedicine applications are currently tested. While physicians’ preferences are commonly investigated, data regarding the patients’ point of view are still lacking. We built a 37 items web-based survey exploring patients’ propensity, awareness, and opinions on telemedicine with the aim to evaluate the sustainability of this approach in MS. Analysing 613 questionnaires out of 1093 that were sent to persons with MS followed at the Multiple Sclerosis Center of Tor Vergata University, Rome, we found that more than half of respondents (54%) were open to having a televisit. Propensity toward telemedicine significantly depended on having a higher income (p = 0.037), living farther from the center (p = 0.038), using computer and tablet (p = 0.010) and using the Internet for other remote activities (p < 0.001), conversely it was not influenced by any specific disease characteristics (i.e. degree of disability). The main advantages and disadvantages of televisit reported by participants were respectively saving time (70%) and impossibility to measure physical parameters (71%). Although the majority of respondents are in favour of televisit, so far this approach is restricted to those displaying better socioeconomic conditions and higher familiarity with technology. Implications of the study are that telemedicine platforms should be better tailored to patients’ demands in order to spread the use of telemedicine, to enhance usability and to increase patients’ adherence.

scholarly journals Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Lisa-Marie Ohle ◽  
David Ellenberger ◽  
Peter Flachenecker ◽  
Tim Friede ◽  
Judith Haas ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Sociodemographic Factors ◽  
Healthcare Research ◽  
Structure Design ◽  
Data Repository ◽  
Research Projects ◽  
Real World Data ◽  
Data Repositories ◽  
Term Data

AbstractIn 2001, the German Multiple Sclerosis Society, facing lack of data, founded the German MS Registry (GMSR) as a long-term data repository for MS healthcare research. By the establishment of a network of participating neurological centres of different healthcare sectors across Germany, GMSR provides observational real-world data on long-term disease progression, sociodemographic factors, treatment and the healthcare status of people with MS. This paper aims to illustrate the framework of the GMSR. Structure, design and data quality processes as well as collaborations of the GMSR are presented. The registry’s dataset, status and results are discussed. As of 08 January 2021, 187 centres from different healthcare sectors participate in the GMSR. Following its infrastructure and dataset specification upgrades in 2014, more than 196,000 visits have been recorded relating to more than 33,000 persons with MS (PwMS). The GMSR enables monitoring of PwMS in Germany, supports scientific research projects, and collaborates with national and international MS data repositories and initiatives. With its recent pharmacovigilance extension, it aligns with EMA recommendations and helps to ensure early detection of therapy-related safety signals.

scholarly journals Long-term effectiveness in patients previously treated with cladribine tablets: a real-world analysis of the Italian multiple sclerosis registry (CLARINET-MS)

2020 ◽  
Vol 13 ◽  
pp. 175628642092268 ◽  
Author(s):  
Francesco Patti ◽  
Andrea Visconti ◽  
Antonio Capacchione ◽  
Sanjeev Roy ◽  
Maria Trojano ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Real World ◽  
Event Analysis ◽  
Treatment Change ◽  
Real World Data ◽  
Indirect Measure ◽  
Disease Modifying Drugs ◽  
Disease Modifying ◽  
Using Data

Background: The CLARINET-MS study assessed the long-term effectiveness of cladribine tablets by following patients with multiple sclerosis (MS) in Italy, using data from the Italian MS Registry. Methods: Real-world data (RWD) from Italian MS patients who participated in cladribine tablets randomised clinical trials (RCTs; CLARITY, CLARITY Extension, ONWARD or ORACLE-MS) across 17 MS centres were obtained from the Italian MS Registry. RWD were collected during a set observation period, spanning from the last dose of cladribine tablets during the RCT (defined as baseline) to the last visit date in the registry, treatment switch to other disease-modifying drugs, date of last Expanded Disability Status Scale recording or date of the last relapse (whichever occurred last). Time-to-event analysis was completed using the Kaplan–Meier (KM) method. Median duration and associated 95% confidence intervals (CI) were estimated from the model. Results: Time span under observation in the Italian MS Registry was 1–137 (median 80.3) months. In the total Italian patient population ( n = 80), the KM estimates for the probability of being relapse-free at 12, 36 and 60 months after the last dose of cladribine tablets were 84.8%, 66.2% and 57.2%, respectively. The corresponding probability of being progression-free at 60 months after the last dose was 63.7%. The KM estimate for the probability of not initiating another disease-modifying treatment at 60 months after the last dose of cladribine tablets was 28.1%, and the median time-to-treatment change was 32.1 (95% CI 15.5–39.5) months. Conclusion: CLARINET-MS provides an indirect measure of the long-term effectiveness of cladribine tablets. Over half of MS patients analysed did not relapse or experience disability progression during 60 months of follow-up from the last dose, suggesting that cladribine tablets remain effective in years 3 and 4 after short courses at the beginning of years 1 and 2.

scholarly journals Disease-modifying therapy prescription patterns in people with multiple sclerosis by age

2021 ◽  
Vol 14 ◽  
pp. 175628642110064
Author(s):  
Yinan Zhang ◽  
Amber Salter ◽  
Shan Jin ◽  
William J. Culpepper ◽  
Gary R. Cutter ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Activity ◽  
Age Groups ◽  
The Elderly ◽  
Department Of Veterans Affairs ◽  
Real World Data ◽  
Research Committee ◽  
The North ◽  
Disease Modifying ◽  
Magnetic Resonance Imaging Mri

Background: Disease-modifying therapies (DMTs) for multiple sclerosis (MS) are approved for their ability to reduce disease activity, namely clinical relapses and signal changes on magnetic resonance imaging (MRI). Disease activity appears age dependent. Thus, the greatest benefit would be expected in younger people with MS (PwMS) whereas benefits in the elderly are uncertain. Methods: Real-world data were obtained from PwMS from the North American Research Committee on Multiple Sclerosis (NARCOMS) registry and the US Department of Veterans Affairs Multiple Sclerosis Surveillance Registry (MSSR). Results: 6948 PwMS were surveyed from NARCOMS, and the MSSR had 1719 participants. In younger adult PwMS 40-years old or less, 183 (61.4%) in NARCOMS and 179 (70.5%) in the MSSR were prescribed DMTs. Among PwMS over age 60, 1575 (40.1%) in NARCOMS and 239 (36.3%) in the MSSR were prescribed DMTs. More PwMS in the age group of 31–40 ( p = 0.035) and 41–50 ( p = 0.001) in the MSSR were using DMTs compared with PwMS of the same age groups in NARCOMS. Conclusion: These findings suggest that DMTs are under-utilized in the younger population and continue to be commonly prescribed in the elderly. Broader access may explain the higher prescription rate of DMTs in US veterans.

scholarly journals Deep Learning-Based Cattle Vocal Classification Model and Real-Time Livestock Monitoring System with Noise Filtering

Animals ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. 357
Author(s):  
Dae-Hyun Jung ◽  
Na Yeon Kim ◽  
Sang Ho Moon ◽  
Changho Jhin ◽  
Hak-Jin Kim ◽  
...  
Keyword(s):  
Deep Learning ◽  
Real Time ◽  
Model Development ◽  
Classification Model ◽  
Intelligence Analysis ◽  
Noise Filtering ◽  
Meat Industry ◽  
Mel Frequency Cepstral Coefficients ◽  
Web Based ◽  
The Status

The priority placed on animal welfare in the meat industry is increasing the importance of understanding livestock behavior. In this study, we developed a web-based monitoring and recording system based on artificial intelligence analysis for the classification of cattle sounds. The deep learning classification model of the system is a convolutional neural network (CNN) model that takes voice information converted to Mel-frequency cepstral coefficients (MFCCs) as input. The CNN model first achieved an accuracy of 91.38% in recognizing cattle sounds. Further, short-time Fourier transform-based noise filtering was applied to remove background noise, improving the classification model accuracy to 94.18%. Categorized cattle voices were then classified into four classes, and a total of 897 classification records were acquired for the classification model development. A final accuracy of 81.96% was obtained for the model. Our proposed web-based platform that provides information obtained from a total of 12 sound sensors provides cattle vocalization monitoring in real time, enabling farm owners to determine the status of their cattle.

The global prevalence of familial multiple sclerosis: an updated systematic review and meta-analysis

2021 ◽  
Author(s):  
Naeim Ehtesham ◽  
Maryam Zare Rafie ◽  
Meysam Mosallaei
Keyword(s):  
Multiple Sclerosis ◽  
Web Of Science ◽  
Meta Analysis ◽  
Disease Onset ◽  
Inclusion Criteria ◽  
Multifactorial Diseases ◽  
Pooled Prevalence ◽  
Significant Difference ◽  
Meta Regression ◽  
Genetic And Environmental Factors

Abstract Background: Considering that familial multiple sclerosis (FMS) can reveal the extent to which genetic and environmental factors each involve in the etiopathogenesis of the disease, we performed an updated meta-analysis of the worldwide prevalence of FMS by addition of recent publications. Methods: A search in PubMed, Scopus, the ISI Web of Science, and Google Scholar up to 20 December 2020 was done. The inclusion criteria were based on the CoCoPop approach (condition, context, and population). The qualified studies entered the process of the meta-analysis by using comprehensive meta-analysis ver. 2 software.Results: The pooled prevalence of MS in relatives of 16179 FMS cases was estimated to be 11.8% (95% CI: 10.7-13) based on a random-effects model. The pooled mean age of disease onset in adult probands was calculated to be 28.7 years (95% CI: 27.2± 30.2). In 13 studies that reported the data of FMS in pediatrics (n=6636) and adults (n=877), the FMS prevalence was 10.8% (95% CI: 8.1-14.2) and 15.5% (95% CI: 13.8-17.4), respectively. Considering the data of 9 studies, the prevalence of FMS in males (n=5243) and females (n=11503) patients was calculated to be 13.7% (95% CI: 10.1-18.2) and 15.4% (95% CI: 10.3-22.4), respectively. The odds ratio of male/female in FMS cases was not statistically significant (OR= 0.9; 95% CI: 0.6-1.2, P=0.55). Subgroup analysis demonstrated a significant difference in the prevalence of FMS between the geographical areas (P= 0.007). The meta-regression model for FMS prevalence was significantly lower in terms of higher latitude (P< 0.001) and increased MS prevalence (P< 0.001). In contrast, meta-regression based on prevalence day was not statistically significant (P=0.29).Conclusions: The prevalence of FMS is more in the pediatric group than that of adults, is distinct between geographical areas, and diminishes with the increment of MS prevalence and latitude. Also, the symptoms initiate relatively at lower ages in FMS cases. By contrast with multifactorial diseases, our analysis unveiled that the prevalence of FMS was not more prevalent in men than women and the risk of MS development in relatives was not more when the affected proband was male.

scholarly journals Web-based physiotherapy for people affected by multiple sclerosis: a single blind, randomized controlled feasibility study

2018 ◽  
Vol 33 (3) ◽  
pp. 473-484 ◽  
Author(s):  
Lorna Paul ◽  
Linda Renfrew ◽  
Jennifer Freeman ◽  
Heather Murray ◽  
Belinda Weller ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measures ◽  
Exercise Programme ◽  
Home Exercise ◽  
Walk Test ◽  
Web Based ◽  
Randomized Controlled ◽  
Home Exercise Programme ◽  
Minute Walk ◽  
Over Time

Objective: To examine the feasibility of a trial to evaluate web-based physiotherapy compared to a standard home exercise programme in people with multiple sclerosis. Design: Multi-centre, randomized controlled, feasibility study. Setting: Three multiple sclerosis out-patient centres. Participants: A total of 90 people with multiple sclerosis (Expanded Disability Status Scale 4–6.5). Interventions: Participants were randomized to a six-month individualized, home exercise programme delivered via web-based physiotherapy ( n = 45; intervention) or a sheet of exercises ( n = 45; active comparator). Outcome measures: Outcome measures (0, three, six and nine months) included adherence, two-minute walk test, 25 foot walk, Berg Balance Scale, physical activity and healthcare resource use. Interviews were undertaken with 24 participants and 3 physiotherapists. Results: Almost 25% of people approached agreed to take part. No intervention-related adverse events were recorded. Adherence was 40%–63% and 53%–71% in the intervention and comparator groups. There was no difference in the two-minute walk test between groups at baseline (Intervention-80.4(33.91)m, Comparator-70.6(31.20)m) and no change over time (at six-month Intervention-81.6(32.75)m, Comparator-74.8(36.16)m. There were no significant changes over time in other outcome measures except the EuroQol-5 Dimension at six months which decreased in the active comparator group. For a difference of 8(17.4)m in two-minute walk test between groups, 76 participants/group would be required (80% power, P > 0.05) for a future randomized controlled trial. Conclusion: No changes were found in the majority of outcome measures over time. This study was acceptable and feasible by participants and physiotherapists. An adequately powered study needs 160 participants.

scholarly journals The Trials and Tribulations of Applied Triangulation: Weighing Different Data Sources

2016 ◽  
Vol 12 (2) ◽  
pp. 166-181 ◽  
Author(s):  
Florian G. Kern
Keyword(s):  
Quantitative Research ◽  
Political Power ◽  
Data Sources ◽  
Qualitative And Quantitative ◽  
Practical Research ◽  
The Status ◽  
Analytical Strategies ◽  
Depth Interviews ◽  
Shed Light ◽  
Illustrative Application

Researchers employ triangulation to increase the validity of inference in qualitative and quantitative research. Leuffen, Shikano, and Walter have presented guidance as to which strategies to use when triangulating data sources. In this article, I explore how their findings can be translated for practical research purposes. I offer an illustrative application concentrating on the political power of traditional political authorities in Uganda and Tanzania. I analyze the status quo of political power and the preferred political power of traditional leaders. To triangulate, I use three sources: (1) constitutional-legal texts, (2) the Afrobarometer survey, and (3) in-depth interviews. I shed light on possible problems and analytical strategies for triangulation in practice, with a specific focus on convergence and divergence of sources.

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