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Learning Center Progress in Spinal Muscular Atrophy Management

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Survey

1. What is your professional field?

Neurologist

Pediatric neurologist

Pediatrician

Orthopedist

Pulmonologist

Physical therapist

Other:

Other

2. How many patients with spinal muscular atrophy (SMA) do you see, on average, per year?

1–10

11–25

26–50

> 50

N/A: I never see patients with SMA

3. How aware are you of the heterogeneity of SMA phenotypes?

Very aware

Aware

Reasonably aware

Not very aware

Not aware

4. How informed are you about the recommended diagnostic process for SMA?

Very well informed

Well informed

Reasonably informed

Poorly informed

5. How often do you use standardized assessment tools to monitor for clinical changes in patients with SMA?

Early-onset patients:

Always

Regularly

Occasionally

Never

N/A: I never see patients with early-onset SMA

Late-onset patients:

Always

Regularly

Occasionally

Never

N/A: I never see patients with late-onset SMA

6. How informed are you about the 2017 international consensus standards for multidisciplinary care for patients with SMA?

Very well informed

Well informed

Reasonably informed

Poorly informed

Not informed

7. How informed are you about the optimal incorporation of novel medical treatment options into the multidisciplinary care plan for SMA?

Very well informed

Well informed

Reasonably informed

Poorly informed

Not informed

8. Do you think your multidisciplinary team is optimally trained for facing the challenges regarding intrathecal drug delivery in patients with SMA?

Yes

No

N/A: I am not involved in treating patients with SMA

Comments:

Comments:

9. How familiar are you with the latest clinical trials investigating novel and emerging treatment options for patients with SMA?

Early-onset patients:

Very familiar

Familiar

Reasonably familiar

Not very familiar

Not familiar

Late-onset patients:

Very familiar

Familiar

Reasonably familiar

Not very familiar

Not familiar

10. How informed are you about the different mechanisms of action of novel and emerging treatment options for SMA?

Very well informed

Well informed

Reasonably informed

Poorly informed

Not informed

11. What do you think are the three most important current challenges in managing patients with SMA? (choose three)

Diagnosing patients with SMA

Standardizing assessment of clinical changes

Lack of treatment options

Lack of local specialists

Identification of patients who will benefit from a specific treatment

Multidisciplinary management

Cost of treatment

Quality of life

Other; (please specify)

Other; (please specify)

12. What do you think are the major gaps in medical education on SMA?

Faculty Welcome

Richard Finkel, MD
Nemours Children’s Hospital
Orlando, FL

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Spinal Muscular Atrophy

Jointly provided by the Elsevier Office of Continuing Medical Education and Ology Medical Education.

Jointly provided by the Elsevier Office of Continuing Medical Education and Ology Medical Education.
Supported by independent educational grant from Biogen.

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