Introduction

Welcome, and thank you for joining the first global, community-driven research prioritization initiative in NMOSD/MOGAD. Your voice is critical in helping us establish a NMOSD/MOGAD “research agenda” — in other words, a strategic research roadmap outlining our shared priorities and common goals.

This agenda will help:
  • Coordinate global research efforts
  • Streamline funding and collaboration; and
  • Accelerate progress toward improved care and outcomes for patients.
We invite individuals worldwide to participate in this final community survey, including NMOSD/MOGAD patients, caregivers, clinicians, researchers, allied health professionals, industry representatives, and other stakeholders.

Why this matters

NMOSD/MOGAD research is moving forward with increasing momentum. New treatments are in development, more researchers are entering the field, and interest from funders is growing. However, the global community does not yet have a shared research agenda, and many important knowledge gaps remain. Patients also continue to face major challenges related to diagnosis, treatment, symptom management, rehabilitation, quality of life, and overall wellbeing.

This is an important opportunity to create the first NMOSD/MOGAD research agenda — one that brings together the perspectives of all stakeholders, centers patient needs, and identifies shared priorities for future research.

While many areas of NMOSD/MOGAD research are important, not all of them can be addressed at once. With limited funding and resources, establishing a shared set of priorities can help our global community focus its efforts and act more quickly on the areas that matter most.

Your impact

We need your help to rank a shortlist of potential research priorities and help guide where future research attention, funding, and collaboration are focused. Your input in this final survey will help determine which priorities rise to the top and shape the final NMOSD/MOGAD research agenda.

This final ranking step builds on two years of work with hundreds of members of the NMOSD/MOGAD community. Through a structured, multi-round survey approach known as a modified Delphi process, hundreds of participants have already helped identify, rate, and narrow down a broad set of research topics into a shortlist of potential priorities.

We need to hear from as many members of the community as possible in this final ranking survey. The more people who take part, the better we can advocate for the resources and support needed to accelerate progress in NMOSD/MOGAD. Early momentum from this work has already strengthened TSF’s ability to build support for and lead high-priority research, including a newly funded $9 million clinical trial to compare relapse prevention therapies in NMOSD. With your help, we can continue to build on this momentum and strengthen efforts to address the community’s most urgent needs.
Completing this survey

You will be shown a list of research topics divided into eight categories. For each category, you will be asked to rank the topics from most important to least important.

This survey will take approximately 20-30 minutes to complete. Your progress is saved each time you click “Next,” allowing you to return later if you close your browser window or get disconnected.

If you are under the age of 13, you will need a parent or adult caregiver to fill this out on your behalf.

If you have any questions or technical issues, please contact Alanna Yee (alanna.yee@sumairafoundation.org) or Jil Sharpe (jil.sharpe@sumairafoundation.org).

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Thank you for supporting this important community-driven effort. Your input is critical in helping us shape the future of NMOSD/MOGAD research!

Best wishes,



Sumaira Ahmed
Executive Director & Founder
The Sumaira Foundation
 
 5% of survey complete.

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