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Impact of COVID-19 on NMOSD: An International Patient Survey Part 1

The Power of Rare

Thank you for your interest in participating in this survey. By participating in surveys, research studies and clinical trials, NMOSD patients have enabled and accelerated many efforts to improve quality of life, develop new treatments & ultimately find cures for this rare disease. Rare patients helping rare patients. That is the power of rare.

Purpose of this Survey

The emergence of COVID-19 has affected all of us. This survey is designed to understand the impact COVID-19 has had on NMOSD patients. Specifically, this survey explores NMOSD patient experiences amid the COVID-19 pandemic. Topics of interest include: COVID-19 disease itself; NMOSD relapses; impact on treatment & clinical care; quality of life; future outlook. This survey is being translated into many diverse languages so that patients around the world can participate and contribute to understanding the effects of COVID-19 on NMOSD. The goal of this effort is to better understand NMOSD patient experiences and improve health quality of life during this pandemic and beyond.

Structure of this Survey

Knowledge of COVID-19 and its impact on individuals & communities is rapidly changing. For this reason, the current survey is unlike any other being performed. It is designed to keep pace with potential impact that COVID-19 has on NMOSD patients over time. This survey is completed in three parts. Part 1 includes simple demographic information patients need only provide once, along with easy-to-click responses to the survey questions. Part 2 will be available 60 days later, and Part 3 will be available 60 days after that. Each part is simple and should take no more than 30 minutes. In this way, your participation will enable a meaningful timeline of the impact COVID-19 has on patients with NMOSD and their healthcare. Please plan to complete all three parts of this survey, as your participation in each part is one key to helping find answers for NMOSD patients around the world.

Thank You So Much !

On behalf of the Guthy-Jackson Charitable Foundation and its Industry Partners, thank you so much for participating in this important survey. While your responses will always remain anonymous, know that your help in finding solutions that benefit all patients with NMOSD are sincerely appreciated.

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