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Includes:

• 5q SMA (SMA I-IV)
• distal SMA
• SMARD
  

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The CNDR collects the following information on SMA patients:

Diagnosis:

• clinical profile
• age of onset, symptom onset
• age at diagnosis
• family history
• genetics results

Clinical features:

• walking, sitting, best current motor function, and best lifetime motor function
• scoliosis
• upper extremity function
• motor function test results
• dysphagia
• pulmonary function test

Interventions:

• scoliosis surgery
• non-invasive and invasive ventilation
• airway interventions
• feeding tube
• SMA-specific treatment and discontinuation

Medical History:

• Comorbidities
• treatments/medications
• procedures
• hospitalizations

Electrophysiology and biomarkers:

• compound muscle action potential

Clinical Trial participation                                 

Social data:

• Living status
• employment status
• occupation
• education
• family status
• income
• population group
• community services

For a more detailed list of the data items collected, please see the CNDR_SMA PDF.