As part of MDA's Frontline COVID-19 Response, MDA would like to hear from the community around the impact of COVID-19.  This survey is to be completed by individuals with muscular dystrophy, ALS and related diseases and/or their caregivers.  This survey is geared to help MDA better understand where there may be needs and gaps in information and support that MDA can prioritize.  Please complete this survey by Wednesday, April 22.  Thank you.

*1.Are you(Required.)

an individual living with a diagnosis served by MDA

a caregiver for an individual living with a diagnosis served by MDA

Other (please specify)

*2.Your Age(Required.)

Under 18

18-24

25-34

35-44

45-54

55-64

65+

*3.Please share your, or your loved one's, diagnosis(Required.)

Acid Maltase Deficiency (Pompe's Disease)Adult Spinal Muscular Atrophy (Aran-Duchenne Type)Amyotrophic Lateral SclerosisBecker Muscular DystrophyCarnitine DeficiencyCarnitine Palmityltransferase DeficiencyCentral Core DiseaseCMT (Peroneal Muscular Atrophy)Congenital Muscular DystrophyCongenital Myasthenic SyndromeDebrancher Enzyme Deficiency (Cori's or Forbe's Disease)Dejerine-Sottas DiseaseDermatomyositisDistal Muscular DystrophyDuchenne Muscular DystrophyEmery-Dreifuss Muscular DystrophyFacioscapulohumeral Muscular DystrophyFriedreichs AtaxiaHyperkalemic Periodic ParalysisHyperthyroid MyopathyHypokalemic Periodic ParalysisHypothyroid MyopathyInclusion Body MyositisInfantile Spinal Muscular Atrophy (Type 1 Werdnig-Hoffman)Intermediate Spinal Muscular Atrophy (Type 2)Juvenile Spinal Muscular Atrophy (Type 3 Kugelberg-Welander)Lactate Dehydrogenase DeficiencyLambert-Eaton (Myasthenic) SyndromeLimb-Girdle Muscular DystrophyMitochondrial MyopathyMyasthenia GravisMyoadenylate Deaminase DeficiencyMyotonia Congenita (Thompsen's Disease)Myotonic Muscular Dystrophy (Steinert's Disease)Myotubular Myopathy (Centronuclear Myopathy)Nemaline Myopathy (Rod Body Myopathy)Oculopharyngeal Muscular DystrophyParamyotonia CongenitaPhosphofructokinase Deficiency (Tauri's Disease)Phosphoglycerate Kinase DeficiencyPhosphoglycerate Mutase DeficiencyPhosphorylase Deficiency (McArdle's Disease)PolymyositisSpinal Bulbar Muscular AtrophyUnknown

*4.What concerns do you have around COVID-19? Please check all that apply.(Required.)

Uncertain of what to do if I, or my loved one, becomes infected

If I, or my loved one, becomes infected, will the hospital understand how to treat me

Will insurance coverage pay for hospitalization, treatment and/or future vaccines

I'm concerned about someone else coming into my home to help me with daily needs and/or medical needs

Financial loss due to COVID-19 by either me and/or a caregiver

I'm concerned that if I, or my loved one, gets sick and needs a ventilator that one won't be available

If hospitalized, I'm concerned their equipment won't work as well as my equipment at home

I worry I won't be able to access the home medical supplies I need

I'm concerned about the length of time it may take for a treatment/vaccine to become approved

Other (please specify)

*5.What is your largest need right now that is impacted by COVID-19?(Required.)

Access to daily need items (groceries, medications, mail, etc)

In-home assistance by a caregiver

Financial assistance to pay bills

Information on creating a plan if I, or my caregiver, get the virus

Access to medical providers

Access to durable medical equipment

Access to home medical supplies

Other (please specify)

*6.What is your biggest fear related to this virus?(Required.)

That I, or my loved one, may contract the virus

That I, or my loved one, will end up hospitalized due to the virus

My area hospital will not have enough supplies to treat all patients

I live alone and if I get sick I won't be able to care for myself

What will I do if my caregiver contracts the virus

If needed, that me, or my loved one, wouldn't be able to obtain a test

Financial loss

My, or my loved one's, overall mental health and well-being

Other (please specify)

*7.Overall, I am concerned that COVID-19 could slow down the pace of research or clinical trials in the neuromuscular space?(Required.)

Yes

No

Maybe

*8.If you, or your loved one, is participating in a clinical trial right now, what is your biggest concern around that trial during this time?(Required.)

I, or my loved one, is not currently participating in a trial

Attending trial follow up visits

Having the trial stopped and/or cancelled

Having transportation to trial visits

Having someone come into my home for a trial visit

If I, or my loved one, contracts the virus, how may it impact my ability to continue in the study

Other (please specify)

*9.Please check all that apply.  In the last three weeks due to COVID-19 and/or social distancing requirements I have/my loved one has: (Required.)

Missed a medical appointment

Have been unable to find needed medical equipment or supplies

Have felt anxious or afraid

Have felt lonely

Have had difficulty getting needed medication

Have lost income

Have had difficulty getting information about impact on neuromuscular disease

Have experienced significant changes to future plans

Other (please specify)

*10.What type of information related to COVID-19 do you feel would be most helpful to you right now? Please check all that apply.(Required.)

More information on how the virus may impact someone with my, or my loved one's, diagnosis

More resources on social distancing

Mental health resources related to social distancing

Information on how to accept items to your home (packages, grocery, mail, etc.)

Resources available to help individuals struggling with the impact of COVID-19

Information on telemedicine

Information on how to be tested

Other (please specify)