The CNDR collects the following information on ALS patients:


  • 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


  • 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.