Two Data-sharing Initiatives Launched Regarding MS and COVID-19

Two Data-sharing Initiatives Launched Regarding MS and COVID-19
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Through two new initiatives, multiple sclerosis (MS) patients and their healthcare providers can contribute to a global effort to study and mitigate the impact of COVID-19 in MS and related disorders.

The initiatives are aimed at helping clinicians identify the best way to manage the novel coronavirus in people with MS and related disorders, and apprising patients of what they need to know to achieve the best outcomes.

iConquerMS is an effort to to increase the engagement of patients in MS research. With an expansive member network, iConquerMS is a data-collection program driven by MS patients; it links those with MS to the larger research community and also to clinical studies. Patients are kept abreast of research results, and are invited to submit questions and suggest research topics.

For the COVID-19 initiative, the iConquerMS online portal now includes a survey in which patients can share their experiences about coping with the pandemic.

Specifically, the survey seeks to learn what patients know about COVID-19, how the disease directly affects them, whether COVID-19 has caused a change in patients’ treatment or quality of life, and what factors affect how patients experience the outbreak.

Results will be de-identified and shared with the international Multiple Sclerosis International Federation and the MS Data Alliance initiative that is gathering information from MS patients and healthcare providers. The hope is that pooled data will advance research into COVID-19 and its impact on MS patients globally, and to assist in the development of diagnostics, treatments, vaccines, and other approaches to managing COVID-19 in MS.

In addition to sharing collected information with scientists, iConquerMS also will share results with participants. Visit this site for more information.

The other initiative, called COViMS (COVID-19 Infections in MS & Related Diseases), is for healthcare professionals, and is a collaboration between the  National MS Society and the Consortium of MS Centers. The two organizations, along with independent experts, have launched the North American MS COVID-19 Clinical Database.

Medical professionals who are caring for patients with MS and other demyelinating disorders, and who have confirmed or suspected COVID-19 cases, are encouraged to use the database to report de-identified outcomes.

The goal of the effort is to swiftly define COVID-19’s impact on MS and associated disorders, and to learn how factors such as age, comorbidities, and treatments affect COVID-19 outcomes. Medical professionals can go here to report a COVID-19 case. More information about COViMS is available in this April 9 article.

“We are counting on robust participation and collaboration,” reads a statement on the COViMS webpage. “We hope to capture the majority of all North American cases of COVID-19 in people with MS and other [central nervous system] demyelinating diseases.”

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