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MOGAD treatment efficacy survey

MOG antibody-associated disease (MOGAD) is a rare autoimmune disease of the central nervous system. By distributing this survey, we would like to learn about the efficacy of the treatments used to prevent MOGAD relapses. This information can help clinicians treating this disease to choose the most effective treatment. Please provide as many details as you can, and upload as many diagnostic reports as possible, so that we would be able to draw sound conclusions. Before uploading diagnostic files, please remove your name and ID number. Any personal information you provide us will be kept secured and anonymized. Your participation is highly appreciated. Thank you!

Today's date

D-M-Y

Please indicate your date of birth

D-M-Y

Current age

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What is your gender?

Female

Male

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What is your country of residency?

Please indicate your race/ ethnicity

African

Asian

Black or African American

First/Native/Indigeous Peoples

Hawaiian/Pacific Islander

Hispanic/Latino

Polynesian/Oceana

White

Other

Is English your preferred language?

Yes

How would you rate your English fluency?

Fluent

Able to fully understand written test such as a questionnaire

Mostly able to understand written test such as a questionnaire

Understand English with difficulty

Have you been diagnosed with MOGAD?

Yes

Not sure

When were you diagnosed?

D-M-Y

Disease duration

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Have you been tested positive for MOG antibodies?

* must provide value

Yes

Not sure

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When was the test performed?

D-M-Y

If you have your positive MOG antibody testing available, please remove your name and ID number and upload it here

Upload file

When was your first relapse of MOGAD?

D-M-Y

What was the first clinical presentation of MOGAD?

Optic neuritis ( reduced visual acuity in one or both eyes, often accompanied by pain around or inside the eyes)

Myelitis (limb weakness, reduced sensation, and\or bladder problems)

Area postrema syndrome (prolonged nausea and vomiting and\or intractable hiccups)

Brainstem syndrome (double vision, facial numbness and\or weakness, hearing loss, dizziness or gait instability)

Narcolepsy or diencephalic syndrome (excessive sleepiness, severe weight loss despite having normal appetite, euphoria, hyperactivity)

Cerebral syndrome (confusion, altered mental status, seizures, weakness and\or numbness of the arm and leg on one side of the body, visual loss of one side of the visual field in both eyes)

ADEM (acute demyelinating encephalomyelitis)

Other (specify)

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Other clinical presentation- please specify

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Please choose the sentence that most accurately describes your current general performance status

I may have some mild symptoms, mostly sensory, but they do not limit my activity. If I do have an attack, I return to normal when the attack has passed.

I have some noticeable symptoms from my disease, but they are minor and have only a small effect on my lifestyle.

I don't have any limitations in my walking ability. However, I do have significant problems due to my disease that limit daily activities in other ways.

The disease does interfere with my activities, especially my walking. I can work a full day, but athletic or physically demanding activities are more difficult than they used to be. I usually don't need a cane or other assistance to walk, but I might need some assistance during an attack.

I use a cane or a single crutch or some other form of support (such as touching a wall or leaning on someone's arm) for walking all the time or part of the time, especially when walking outside. I think I can walk 25 feet in 20 seconds without a cane or crutch. I always need some assistance (cane or crutch) if I want to walk as far as 3 blocks.

To be able to walk 25 feet, I have to have a cane, crutch, or someone to hold onto. I can get around the house or other buildings by holding onto furniture or touching the walls for support. I may use a scooter or wheelchair if I want to go greater distances.

To be able to walk as far as 25 feet I must have 2 canes or crutches or a walker. I may use a scooter or wheelchair for longer distances.

My main form of mobility is a wheelchair. I may be able to stand and/or take 1 or 2 steps, but I can't walk 25 feet, even with crutches or a walker.

Unable to sit in a wheelchair for more than 1 hour

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