Multiple Forecast Visualizations (MFVs): Trade-offs in Trust and Performance in Multiple COVID-19 Forecast Visualizations.

The prevalence of inadequate SARS-COV-2 (COVID-19) responses may indicate a lack of trust in forecasts and risk communication. However, no work has empirically tested how multiple forecast visualization choices impact trust and task-based performance. The three studies presented in this paper (N = 1299) examine how visualization choices impact trust in COVID-19 mortality forecasts and how they influence performance in a trend prediction task. These studies focus on line charts populated with real-time COVID-19 data that varied the number and color encoding of the forecasts and the presence of best/worst-case forecasts. The studies reveal that trust in COVID-19 forecast visualizations initially increases with the number of forecasts and then plateaus after 6-9 forecasts. However, participants were most trusting of visualizations that showed less visual information, including a 95% confidence interval, single forecast, and grayscale encoded forecasts. Participants maintained high trust in intervals labeled with 50% and 25% and did not proportionally scale their trust to the indicated interval size. Despite the high trust, the 95% CI condition was the most likely to evoke predictions that did not correspond with the actual COVID-19 trend. Qualitative analysis of participants' strategies confirmed that many participants trusted both the simplistic visualizations and those with numerous forecasts. This work provides practical guides for how COVID-19 forecast visualizations influence trust, including recommendations for identifying the range where forecasts balance trade-offs between trust and task-based performance.

Nusinersen efficacy data for 24-month in type 2 and 3 spinal muscular atrophy.

The study reports real world data in type 2 and 3 SMA patients treated for at least 2 years with nusinersen. Increase in motor function was observed after 12 months and during the second year. The magnitude of change was variable across age and functional subgroup, with the largest changes observed in young patients with higher function at baseline. When compared to natural history data, the difference between study cohort and untreated patients swas significant on both Hammersmith Functional Motor Scale and Revised Upper Limb Module both at 12 months and at 24 months.

Impact of COVID-19 forecast visualizations on pandemic risk perceptions.

People worldwide use SARS-CoV-2 (COVID-19) visualizations to make life and death decisions about pandemic risks. Understanding how these visualizations influence risk perceptions to improve pandemic communication is crucial. To examine how COVID-19 visualizations influence risk perception, we conducted two experiments online in October and December of 2020 (N = 2549) where we presented participants with 34 visualization techniques (available at the time of publication on the CDC's website) of the same COVID-19 mortality data. We found that visualizing data using a cumulative scale consistently led to participants believing that they and others were at more risk than before viewing the visualizations. In contrast, visualizing the same data with a weekly incident scale led to variable changes in risk perceptions. Further, uncertainty forecast visualizations also affected risk perceptions, with visualizations showing six or more models increasing risk estimates more than the others tested. Differences between COVID-19 visualizations of the same data produce different risk perceptions, fundamentally changing viewers' interpretation of information.

Nusinersen in pediatric and adult patients with type III spinal muscular atrophy.

OBJECTIVE: We report longitudinal data from 144 type III SMA pediatric and adult patients treated with nusinersen as part of an international effort. METHODS: Patients were assessed using Hammersmith Functional Motor Scale Expanded (HFMSE), Revised Upper Limb Module (RULM), and 6-Minute Walk Test (6MWT) with a mean follow-up of 1.83 years after nusinersen treatment. RESULTS: Over 75% of the 144 patients had a 12-month follow-up. There was an increase in the mean scores from baseline to 12 months on both HFMSE (1.18 points, p = 0.004) and RULM scores (0.58 points, p = 0.014) but not on the 6MWT (mean difference = 6.65 m, p = 0.33). When the 12-month HFMSE changes in the treated cohort were compared to an external cohort of untreated patients, in all untreated patients older than 7 years, the mean changes were always negative, while always positive in the treated ones. To reduce a selection bias, we also used a multivariable analysis. On the HFMSE scale, age, gender, baseline value, and functional status contributed significantly to the changes, while the number of SMN2 copies did not contribute. The effect of these variables was less obvious on the RULM and 6MWT. INTERPRETATION: Our results expand the available data on the effect of Nusinersen on type III patients, so far mostly limited to data from adult type III patients.

Friedreich ataxia in COVID-19 time: current impact and future possibilities.

COVID-19 outbreak profoundly impacted on daily-life of patients with neurodegenerative diseases, including those with ataxia. Effects on interventional trials have been recently described. Conversely, changes in physical activity programs, which are crucial in care of ataxic patients, have not been assessed yet.Here we used a structured electronic survey to interview twenty patients with Friedreich ataxia (FA) on changes in physical activity during the lockdown in Italy.Regular physiotherapy was interrupted for most patients and up to 60% of them referred a substantial worsening of self-perceived global health. However, FA patients (especially those mildly affected) adopted voluntarily home-based training strategies and, in 30% of cases, used technology-based tools (TBTs) for exercise.COVID-19 crisis thus disclosed the urgent need to support ataxic patients improving systems for remote physical activity and technology-based assistance.

Estimating the impact of COVID-19 pandemic on services provided by Italian Neuromuscular Centers: an Italian Association of Myology survey of the acute phase.

INTRODUCTION: Since February 2020, the outbreak of COVID-19 in Italy has forced the health care system to undergo profound rearrangements in its services and facilities, especially in the worst-hit areas in Northern Italy. In this setting, inpatient and outpatient services had to rethink and reorganize their activities to meet the needs of patients during the "lockdown". The Italian Association of Myology developed a survey to estimate the impact of these changes on patients affected by neuromuscular disorders and on specialized neuromuscular centers during the acute phase of COVID-19 pandemic. METHODS: We developed an electronic survey that was sent to neuromuscular centers affiliated with the Italian Association of Myology, assessing changes in pharmacological therapies provision, outpatient clinical and instrumental services, support services (physiotherapy, nursing care, psychological support) and clinical trials. RESULTS: 40% of surveyed neuromuscular centers reported a reduction in outpatient visit and examinations (44.5% of centers in Northern regions; 25% of centers in Central regions; 50% of centers in Southern regions). Twenty-two% of centers postponed in-hospital administration of therapies for neuromuscular diseases (23.4% in Northern regions; 13.0% in Central regions; 20% in Southern regions). Diagnostic and support services (physiotherapy, nursing care, psychological support) were suspended in 57% of centers (66/43/44% in Northern, Central and Southern centers respectively) Overall, the most affected services were rehabilitative services and on-site outpatient visits, which were suspended in 93% of centers. Strategies adopted by neuromuscular centers to overcome these changes included maintaining urgent on-site visits, addressing patients to available services and promoting remote contact and telemedicine. CONCLUSIONS: Overall, COVID-19 pandemic resulted in a significant disruption of clinical and support services for patients with neuromuscular diseases. Despite the efforts to provide telemedicine consults to patients, this option could be promoted and improved further. A close collaboration between the different neuromuscular centers and service providers as well as further implementation of telehealth platforms are necessary to ensure quality care to NMD patients in the near future and in case of recurrent pandemic waves.