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The CNDR collects the following information on ALS patients:

Diagnosis:

• El Escorial, and Upper and Lower motor neuron involvement
• date of diagnosis
• date and region of symptom onset
• family history
• genetic testing results

Clinical features:

• weight and height
• ongoing affected regions
• ALS functional Rating Scale
• pulmonary function test
• cognitive impairment and behavioural impairment

Interventions:

• Secretion interventions
• airway interventions
• manual/power chair and orthoses
• riluzole 
• non-invasive and invasive ventilation
• feeding tube 

Clinical trial participation

Tissue Inventory

Social Data:

• Transportation
• home care
• respite care
• personal directive
• lifestyle information
• occupation
• income
• military status
• education
• population group

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