COVID-19 data sharing: Collaborating to bridge the data gap in Latin America

Sharing data during the COVID-19 pandemic

The COVID-19 pandemic has led to changes in access to medical treatment, questions about its impact on people with MS and uncertainty across the world. In Latin America there has been very little data about COVID-19 and people with MS, until now… A growing number of studies have sought to address the gaps in information, with experts collaborating across the region to gather data and find answers.

In April 2020, MSIF and our members joined forces with the MS Data Alliance (MSDA) to lead the COVID-19 and MS global data sharing initiative. The initiative collected and shared information on COVID-19 in people with MS from around the world at record pace. The results informed clinical decision making during the pandemic. As the largest data set of people with MS and COVID-19, the initiative underpins MSIF’s global COVID-19 advice for people with MS, which has been developed by an international group of expert advisors.

The initiative brought together 21 data organisations – 4 of which came from Latin America – and gathered information on over 1,000 people with MS from 80 countries. Researchers in Latin America have continued to build the momentum of this data sharing, expanding on the data collected to find answers specific to the region. Two such studies recently published their findings, providing new information about COVID-19 hospitalisations of people with MS in Latin America, as well as the impact of the pandemic on clinical care.

Collaborative efforts such as these are addressing the gaps in vital data about people with MS. The Atlas of MS shows that there is considerable variation in the availability and quality of epidemiological data across countries as well as a lack of publications addressing the availability of and access to MS diagnosis and treatments. This makes these findings in Latin America all the more important.

Changes in the healthcare of people with MS from Latin America during the COVID-19 pandemic

The first study explores the changes to the healthcare of people with MS in Latin America during the COVID-19 pandemic. The study provides insight into how access to healthcare has been impacted, analysing changes to use of DMTs, laboratory tests and MRI monitoring, and access to rehabilitation.

The data

Data for this research was collected in a two-part survey designed by researchers from Esclerosis Multiple Argentina (EMA). The first part of the survey collected data as specified by the global data sharing initiative, whilst the second part had additional questions focused on changes to clinical care since the pandemic began. The survey was promoted across MSIF’s networks in Latin America, and a link to the survey was hosted on the COVID-19 and MS global data sharing platform. MSIF also supported EMA in hosting a webinar for leaders of MS organisations in Latin America to learn more about the initiative and ask the lead researchers questions. High attendance at this webinar demonstrated the demand for this information across the region. The final data set comprised 602 individuals with MS from 16 countries across Latin America.

The results

The survey revealed significant changes to the routine care of people with MS in Latin America, and reported changes across all three areas of MS care.

Of the three areas investigated, changes to the use of DMTs were the least prevalent, however shifts were still evident. 29 (6.7%) people receiving continuous oral or injectable medication discontinued their treatment, whilst 16 (18.8%) people on infusion therapy or cladribine IV postponed the treatment. Out of 16 individuals who had been close to starting a DMT, 11 (68.8%) postponed this process. Scheduled laboratory monitoring for people on DMTs was postponed for 29.9% of the participants and 32.7% of people deferred MRI monitoring during the pandemic. It is worrying to see delays or discontinuation, as early treatment with disease modifying therapies can change the course of a person’s MS and reduce future disability (Brain health: time matters in multiple sclerosis), and laboratory tests and MRI scans are vital to monitor the efficacy and safety of the therapies. It will be important to understand the long-term impacts of these shifts.

The study showed that access to rehabilitation services was most affected. Out of 175 people receiving some form of rehabilitation, 115 (65.7%) reported not being able to continue their rehabilitation as usual. The survey found that all rehabilitative treatment had been affected during the pandemic, but physical therapies such as exercise therapy, physiotherapy and hydrotherapy were affected most significantly. The least affected form of rehabilitation was psychotherapy, however even in this area 37.2% of people reported disruption. The increased demand for rehabilitation services from patients with COVID-19 or ‘long COVID’, is likely causing additional pressure on these services.

During the pandemic, we have seen an increase in healthy living information resources, specifically on physical activity, being produced by MS organisations. This points to an understanding of the changes in rehabilitative care that this study demonstrates. One example of MS organisations working to fill that gap was the publication of a resource on Yoga and Meditation by EMA.

Overall the study showed a significant shift in the routine care of people with MS. The findings suggest that the main reason for changes to MS care was administrative or insurance-related. Other significant factors included the patient’s own decision, the decision of their healthcare professional and restrictions to movement in their area. The Clinical Management findings of the Atlas of MS revealed significant barriers to accessing care such as DMTs and rehabilitation. This study in Latin America indicates that such barriers have been amplified by the effects of COVID-19.

Hospitalisations of people with MS or Neuromyelitis optica spectrum disorder and COVID-19

The second study of interest, ‘COVID-19 in MS and NMOSD patients in LATAM’, drew from the data collected by the Registro Latinoamericano de Covid-19 y esclerosis multiple (RELACOEM), a Latin American registry of people with MS or Neuromyelitis optica spectrum disorder (NMOSD) and COVID-19. Those included in the registry have all either had COVID-19 confirmed through a test, or suspected infection due to typical symptoms. This registry also collects data as specified by the COVID-19 and MS global data sharing initiative. As a data partner in the initiative, RELACOEM is included in the recent global analysis of data from the initiative.

The data

Of the 145 people included in the registry when this paper was written, 129 (89%) were people with MS, whilst the remaining 16 (11%) were people with NMOSD. The data came from people across 15 countries in Latin America, and the study paints a picture of the clinical characteristics and outcomes of COVID-19 across the region.

The results

Of the 129 people with MS, 15 (11.6%) required hospitalisation/intensive care, and no deaths were recorded. The proportion of hospitalisations and mortality was slightly higher in NMOSD patients. The study identified three factors that contribute to the severity of COVID-19 in people with MS: older age, higher Expanded Disability Status Score (EDSS), and longer disease duration. These factors were in line with the first findings from the analysis of the COVID-19 and MS global data sharing initiative.

Unlike some other studies, this one identified no other factors (including gender, obesity and DMT use) that contributed to worse COVID-19 outcomes in the data set. However, it is important to note some of the limitations of the data. The RELACOEM registry is likely biased towards more severe cases of COVID-19 in Latin America (those which required medical treatments) and some countries like Brazil are underrepresented. Moreover, conclusions about DMTs are caveated by the fact that some MS treatments are not commonly used in Latin America due to lack of access. However, the study does reveal the most comprehensive information to date about the impact and outcomes of COVID-19 infection in people with MS and NMOSD in Latin America. It is an important step in closing the regional information gaps on this topic.

Limitations & hopes for the future

Both these studies are among the first of their type conducted in Latin America, providing vital information on the impact of COVID-19 on people with MS. Despite data limitations including disproportionate representation from certain countries and underrepresentation in others, these studies set a precedent for future collaborative work across the region and highlight a need to improve the statistical power of similar research. This research provides hope for future collaboration and helps bridge the gap in data-based knowledge in Latin America.